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tRi2Day Newsletter

Mon, 11 May 2026 14:12:25 GMT

1st Quarter - 2026 Edition

The latest edition of the tRi2Day Newsletter is now available, highlighting important updates, activities, educational initiatives, advocacy efforts, and developments within the rheumatology community during the first quarter of 2026.

This edition features key milestones, awareness campaigns, patient engagement activities, professional collaborations, and ongoing efforts aimed at improving rheumatology care and support. Readers will also gain insight into upcoming initiatives and opportunities to stay connected with the community.

We invite you to download and read the full newsletter to stay informed and engaged with the latest happenings in rheumatology and patient advocacy.

Download the tRi2Day newsletter below to explore the full publication.

Why Rheumatology Awareness in Ghana Cannot Wait

Fri, 17 Apr 2026 14:19:58 GMT

As 2026 progresses, the need for increased awareness of rheumatic and musculoskeletal diseases in Ghana is becoming more urgent. These conditions, including arthritis and lupus, continue to affect many individuals, often without early diagnosis or proper management.

One of the biggest challenges remains late detection . Many people dismiss early symptoms such as joint pain, stiffness, or fatigue, only seeking help when the condition has progressed. This delay can lead to complications that significantly affect quality of life.

At this point in the year, there is a growing push for education and awareness campaigns . Communities are beginning to understand that these conditions are not simply part of ageing but require proper medical attention. Early diagnosis can make a significant difference in managing symptoms and preventing long-term damage.

Access to specialist care remains limited, making outreach and education even more important. Training healthcare professionals and increasing public knowledge are key steps toward improving outcomes across the country.

Another important development is the role of digital health solutions . Teleconsultations and mobile health platforms are gradually helping bridge gaps in access, particularly for individuals in underserved areas.

Lifestyle management is also gaining attention. Encouraging regular movement, balanced nutrition, and early screening can help reduce the overall burden of these conditions.

As we move into the second half of 2026, the focus must remain on action. Raising awareness, improving access, and supporting patients are critical steps toward building a stronger, more responsive healthcare system.

Rheumatology care is not just a medical issue. It is a quality-of-life issue that deserves greater attention now.

Buernorki’s Story: Embracing Healing, Family Support, and Self-Acceptance Through Autoimmune Challenges

Tue, 24 Mar 2026 06:49:06 GMT

My name is Buernorki Plahar. I have been living with an autoimmune condition since I was diagnosed in 2017. It hasn’t always been easy, but through it all, I have learned how to manage it. It will eventually affected my skin. My treatment includes medications such as prednisolone, hydroxychloroquine, omeprazole, osteocare, and occasional supplements to help boost my hemoglobin levels. I also have a very supportive and understanding family. Who have been my hope and strength. I have never felt alone.

About six months ago, after returning from a funeral in my village, I noticed rashes appearing on my face. At first, I thought they were the usual flare-ups I had come to understand. But this time, they developed into patches that spread more quickly than I had ever experienced before. It was difficult to watch, especially as it extended to my arms. Still, I held on, trusting that healing would come—and last month, it finally did.

That period tested me in many ways. It affected my self-esteem, as people made assumptions and spoke carelessly, sometimes right in front of me and sometimes behind my back. Even my son felt the weight of it, sharing with me that some of his classmates teased him about my appearance. Hearing that was painful, but it also reminded me how important it is to stay strong not just for myself, but for him too.

Today, I am in a better place—physically and emotionally. I have come to accept the changes in my skin, and more importantly, I have embraced myself fully. My family stands by me with love and understanding, no longer questioning but simply supporting. My colleagues, too, have shown acceptance, allowing me to feel comfortable and confident again.

This journey has taught me resilience. It has shown me that healing is not just about the body, but also about the mind and spirit. I am still here, still standing, and still hopeful for brighter, healthier days ahead.

Elsie’s Story: From Confidence to Crisis and Learning to Live Again with Lupus and Psoriasis

Tue, 24 Mar 2026 06:45:59 GMT

I used to spend a lot of time in front of my mirror, I loved to see myself. I took such great care of my skin; the spa treats and the best skin products. At 25, I was in my prime, having completed my tertiary education and finally landed my first job. My life was taking shape. I was looking good, I was strong, I was ready to take on the world. Or so I thought.

All was well until I suddenly started feeling weak and my joints where aching terribly . I got very sick and was moved from hospital to the hospital looking for solutions to what ailed me. It took a whole year to be diagnosed . The physician said it was Systemic Lupus Erythematosus ( Lupus) and finally If it had a name and was known we could treat it. There was hope for me.

One noticeable sign of my condition was a rash on my face that looked like if a butterfly had perched and spread its wings (butterfly/malar rash). As it faded gradually, I noticed some patches on my skin, especially on my hands and legs, and then my scalp. I had to cut my hair because it started falling out in large patches. At this point my skin looked terrible. Thick angry looking flakey patches.

Me who would spend extra minutes looking at my reflection couldn’t bear to see myself again.

Psoriasis was the name of what had begun to happen to me and it came with bad, crazy itching. My skin became so dry and cracked especially around the joints and it also became very sensitive.

It was difficult to step out publicly, the stares, the distance people gave me . Felt like I had a plague, the remarks eventually became unbearable. I lost my job, friends and interest in life. I resigned myself to staying at home on most days.

The treatments too were very expensive I was left with stretchmarks, moon face(swollen), scars and a rough bumpy skin. My Self-confidence was totally eroded, life itself was bland. While all my mates were getting married and living their best lives, I was stuck in my bedroom which was mostly dark or routinely attending hospital appointments.

I have recovered a bit of my self-confidence over a time but my scars and patches tell a story that is hard to miss. I barely look in the mirror still and I barely show skin, I still barely go out.

I am trying to find myself but now I am living one day at a time.

Linda’s Story: Finding Strength and Self-Worth While Living with Systemic Sclerosis

Tue, 24 Mar 2026 06:43:27 GMT

I am Linda, a systemic sclerosis warrior. Systemic sclerosis, also known as scleroderma, is an autoimmune disease that occurs when the immune system mistakenly attacks healthy tissue, leading to excessive collagen production and fibrosis, which is scarring of the skin and internal organs.

My journey started with skin thickening and tightening. I assumed it was the skincare products I was using, the soap and body creams, so I changed them. My skin continued to lose its pigmentation (colour), causing white patches on my face, elbows, toes, and the backs of my palms. This made me look aged.

My skin kept changing, and quickly moved from bad to worse. The pain that came with it was unbearable. I lost relationships, and the stigmatization, especially from friends, was very heartbreaking. Friends I used to eat and hang with started to avoid me. This deeply affected my self esteem and eventually caused me to lose confidence in myself.

The financial burden was overwhelming because I was desperate for a solution. I tried almost anything anyone suggested, consuming all manner of hopeful cures and procedures, none worked. They didn’t know exactly what was wrong with me.

I was finally diagnosed in 2019. At last, relief came because now my condition had a name. Now accepting the diagnosis was challenging, this had no cure, it could get worse. COULD IT GET WORSE!

It was very frustrating to step out and have people stare at me or make fun of me because of how I looked. It hurt deeply when people saw me and the first thing they said was “Eissh!” To avoid the attention and embarrassment, I chose not to go out at all.

I’ve had an episode where a person refused to shake my hand, clearly looking uncomfortable which made me feel very less than human. I felt I must be repulsive.

With time, a psychologist helped me accept the new me, and I began making changes in how I dressed to suit my condition. My family and a few genuine friends have helped me maintain my joy despite everything. I apply makeup whenever I go out, and I wear long sleeves and skirts with pockets to hide my fingers.

The Word of God in 2 Corinthians 4:16 says, “Therefore, we do not give up. Even if the person we are on the outside is wasting away, the person we are on the inside is being renewed day by day. For our momentary and light tribulations"

This encouraging scripture keeps me going and helps me focus more on my inner beauty than my outer appearance.

Real queens like me turn sorrow into joy. That’s what I am doing everyday. Holding my head up.

Ama’s Story: Living Through Diagnosis, Treatment, and the Hidden Trauma of Autoimmune Disease

Tue, 24 Mar 2026 06:37:44 GMT

In 2010, I started feeling unwell. Nothing specific, just a general feeling of being off. One morning, I woke up and my roommate told me that half of my face was swollen. Later, I noticed swollen lymph nodes (hard like balls underneath the skin) in my neck, armpit, and pelvic area. It felt like everywhere lymph nodes could be found.

I experienced a kind of heavy fatigue that made me sleep a lot. Being in my second year in school and sleeping while my mates were out studying made me look unserious.

In 2011, I changed my hostel and found myself in a new environment. I cannot remember exactly what happened that day, but I recall ending up on a hospital bed at Korle Bu. Whatever it was my family had became tight lipped about it, but I gathered bits of the story as the days went by.

I later learned that I was first taken to Tema General Hospital, where I was admitted for three weeks. By God’s grace, the doctor made the diagnosis and referred us to Korle Bu. Prof. Addo, a dermatologist, received me because my skin was affected. I remember having rashes that caused intense itching. Miraculously all of that eventually disappeared.

I spent Christmas in 2011 at Korle Bu and was discharged in Febuary the next year.

One of the good outcomes of this journey was meeting the doctor who cared for me at Tema General Hospital, Dr. Kwashie. At the time of my admission, doctors were on strike, yet he made time to research and understand what was happening, especially since the condition mimics many other diseases and at the time very little was known about it.

After discharge and continued reviews at dermatology, Prof. (my physician) noticed kidney involvement and transferred me to the renal unit. I have since been cared for by dedicated and compassionate doctors.

The Medication:

Nothing prepares you for the shock of being administered methylprednisolone. Having been on oral prednisone for a while, one becomes familiar with the side effects. Weight gain, increased appetite, moon face, and hair issues and even the number of pills to swallow.

However, methylprednisolone takes it to another level.

Today, I live with the evidence of my struggle all over my body, To this day people still stare. I become body conscious, as a result. dealing with those whose opinion of what they see must be caused by pregnancy so the conclusion that it must have been pregnancy that was the cause that story. Dealing with all that on a regular eventually broke me down. Some people even go further to offer unsolicited solutions, clearly not even listening to what I will even be saying. I understand that they may have had good intentions but what good is ignorance proffered aggressively because they are hoping to be right. At the expense of my health and feelings.

In the end, I had to shut out the chatter, the leering eyes, to preserve my mental health. I do not think I have gotten over the trauma I went through. I still prefer to be alone. I still prefer not to go out. I know my medications worked most times, An autoimmune disease can be unpredictable and sometimes I have moments where I am afraid it will be full blown again.

I am grateful to my family, the medical teams, and the physicians who took care of me. I am grateful that I was diagnosed as quickly as I was. The estimated time of diagnosis for some people averages four(4) years and by then for some organ damage may have set it. Its an uphill battle I am on. I intend to win. For the most part I am still here.

World Kidney Day

Thu, 12 Mar 2026 17:48:08 GMT

Why Kidney Health Matters for People Living with Autoimmune and Rheumatic Diseases

Each year, the global health community observes World Kidney Day to raise awareness about the importance of kidney health and the prevention of kidney disease. The campaign highlights the growing burden of kidney disease worldwide and encourages early screening, prevention, and better access to care.

For organisations working in the field of autoimmune and rheumatic diseases, kidney health is an especially important topic. Many autoimmune conditions can affect the kidneys, sometimes leading to serious complications if not detected and managed early. Raising awareness about this connection is essential to improving outcomes for patients.

The Hidden Link Between Rheumatic Diseases and Kidney Health

Autoimmune rheumatic diseases occur when the body’s immune system mistakenly attacks its own tissues. These conditions may affect the joints, muscles, skin, and internal organs, including the kidneys.

Certain autoimmune diseases such as lupus and vasculitis can cause inflammation that damages kidney tissues. This condition, often referred to as lupus nephritis when associated with lupus, can lead to reduced kidney function over time. Because kidney damage may develop silently, many patients may not notice symptoms until the disease has already progressed.

This is why education, early diagnosis, and regular medical monitoring are critical for people living with autoimmune conditions.

Supporting Patients Beyond Diagnosis

Patient focused organisations play a vital role in improving the lives of individuals living with autoimmune and rheumatic diseases.

The Rheumatology Initiative Ghana works to improve the lives of individuals affected by autoimmune rheumatic diseases through awareness, education, advocacy, and patient support. Founded in 2012, we focuses particularly on supporting young people and families navigating these lifelong conditions.

We provide education about autoimmune diseases, promotes early diagnosis, and advocates for improved access to care for patients across Ghana and Africa. In addition to awareness campaigns, the we support patients through community networks and structured programmes designed to address the physical, emotional, and financial challenges of chronic illness.

Empowering Patients Through Community and Support

Living with a chronic autoimmune condition can often feel isolating. Support systems and patient communities can make a significant difference in helping individuals cope with the daily challenges of their condition.

One example is the Rheusolute support group, which provides a safe space for young people and adolescents living with autoimmune conditions to connect, share experiences, and learn practical ways to manage their health.

Beyond emotional support, patient programmes also provide practical assistance. Through our Patient Assistance Programme, we have supported hundreds of patients with access to medications, medical consultations, and laboratory tests that may otherwise be difficult to afford.

Such initiatives are particularly important in settings where access to specialised rheumatology care may be limited.

Protecting Kidney Health

Maintaining kidney health is an important part of managing autoimmune and rheumatic diseases. Patients and caregivers can take several steps to reduce the risk of kidney complications:

Attend regular medical check ups and laboratory tests
Monitor blood pressure and overall health
Follow prescribed treatment plans carefully
Maintain a balanced diet and adequate hydration
Seek medical attention if symptoms such as swelling, fatigue, or changes in urination occur

Healthcare professionals also play a key role by ensuring early screening for kidney involvement in patients diagnosed with autoimmune diseases.

The Power of Awareness

World Kidney Day reminds us that awareness can save lives. Many kidney conditions progress silently, and without early detection, patients may only discover the disease when it has reached advanced stages.

Through awareness campaigns, community education, and patient support initiatives, organisations working in rheumatology and autoimmune care help ensure that individuals receive the information, resources, and support they need to live healthier lives.

For people living with autoimmune diseases, understanding the connection between their condition and kidney health is a crucial step toward preventing complications and improving long term outcomes.

Moving Forward Together

Improving kidney health requires collaboration between patients, healthcare providers, advocacy organisations, and communities.

By promoting education, supporting patients, and advocating for better access to care, initiatives focused on autoimmune diseases continue to make a meaningful difference. Through collective effort, we can build a future where autoimmune and rheumatic conditions are better understood, diagnosed earlier, and managed more effectively.

World Kidney Day serves as a reminder that protecting kidney health is not only a medical priority. It is a shared responsibility for all.

Ghana Independence Day | Advancing Rheumatology Care in Ghana

Fri, 06 Mar 2026 09:00:32 GMT

On 6th March, Ghana proudly celebrates Independence Day, a historic moment that marked the nation’s freedom and the beginning of self-determination. It is a day of reflection, unity, and renewed commitment to building a stronger future for all Ghanaians.

Independence is more than political sovereignty. It also represents access, access to opportunity, education, and healthcare. As Ghana continues to grow and develop, strengthening specialised healthcare services remains an essential part of national progress.

Rheumatic and musculoskeletal diseases affect thousands of individuals across Ghana, often limiting mobility, productivity, and overall quality of life. Conditions such as rheumatoid arthritis, lupus, and other autoimmune disorders require early diagnosis, proper management, and continuous care. Unfortunately, awareness and access to specialised rheumatology services remain limited in many communities.

Ghana Independence Day reminds us that national progress must include healthcare equity. A truly independent nation ensures that its citizens are not restricted by preventable suffering or untreated chronic illness. Advocacy, education, and medical collaboration are key to closing these gaps.

This occasion is an opportunity to:

Raise awareness about rheumatic diseases
Promote early diagnosis and treatment
Support training and capacity building in rheumatology
Encourage public understanding of autoimmune conditions

Healthcare independence means empowering patients with knowledge, equipping professionals with skills, and strengthening systems that deliver sustainable care.

As we commemorate Ghana’s journey from 1957 to today, we also look ahead. The future of healthcare in Ghana depends on partnership, innovation, and commitment to underserved medical fields. Every awareness campaign, every patient supported, and every healthcare professional trained contributes to national growth.

This Independence Day, let us celebrate not only our political freedom but also our shared responsibility to build a healthier Ghana, one where specialised care is accessible and every individual can live with dignity and strength.

Happy Independence Day, Ghana.

Celebrating the Vision and Leadership of Professor Dzifa Dey

Thu, 05 Mar 2026 07:15:05 GMT

On March 5th, we celebrate the birthday of Ida Dzifa Dey , Founder and Director of The Rheumatology Initiative (tRi) Ghana; a visionary physician whose work has significantly shaped the field of rheumatology in Ghana and across Africa.

Professor Dey’s dedication to improving care for people living with autoimmune diseases has transformed the landscape of rheumatology in the country and inspired many healthcare professionals to pursue this important specialty.

A Pioneer in Rheumatology

Dzifa Dey is a Consultant Physician and Rheumatologist at the Korle Bu Teaching Hospital and a Professor at the University of Ghana Medical School .

Her pioneering work includes establishing Ghana’s first rheumatology clinic at Korle Bu Teaching Hospital in 2009 , a milestone that opened the door for improved diagnosis and treatment of autoimmune and musculoskeletal diseases in the country.

Recognising the urgent need for awareness, education, and patient support, she founded The Rheumatology Initiative (tRi) Ghana in 2012. The organisation focuses on raising awareness, supporting patients, and promoting research into autoimmune rheumatic diseases across Ghana and the wider African region.

A Passion for Advocacy and Education

Throughout her career, Professor Dey has worked tirelessly to address the lack of awareness surrounding autoimmune diseases. These conditions are often misunderstood, leading many patients to suffer silently or receive delayed diagnoses.

Through her leadership, numerous awareness campaigns, educational programmes, and patient support initiatives have been launched to help bridge this knowledge gap. The organisation also creates platforms where patients and families can learn about their conditions, connect with others, and access valuable health information.

Her work has also contributed to the training and mentoring of many medical professionals in the field of rheumatology, strengthening healthcare capacity across the region.

International Recognition

Professor Dey’s contributions to global rheumatology have been widely recognised. She has received several honours, including the Distinguished International Rheumatology Professional Award from the American College of Rheumatology for her advocacy and public health contributions to the global rheumatology community.

Her research interests include autoimmune diseases such as systemic lupus erythematosus and other connective tissue disorders, with a focus on improving patient outcomes in resource-limited settings.

A Legacy of Hope

Beyond her professional achievements, Professor Dey is widely respected for her compassion and dedication to patients living with chronic illness. She has consistently championed the belief that individuals living with autoimmune diseases deserve dignity, understanding, and access to quality healthcare.

Her leadership continues to inspire a growing movement focused on improving rheumatology care across Africa.

Celebrating a Life of Impact

As we celebrate Professor Dzifa Dey’s birthday, we recognise not only her remarkable achievements but also her unwavering commitment to transforming lives through medicine, research, and advocacy.

Her work continues to bring hope to patients, families, and healthcare professionals working toward a future where autoimmune diseases are better understood, diagnosed earlier, and managed more effectively.

Happy Birthday, Professor Dey, and thank you for your continued dedication to improving lives.

March is Autoimmune Awareness Month – Why Awareness Matters in Ghana

Mon, 02 Mar 2026 07:05:37 GMT

Every year, March serves as Autoimmune Awareness Month , a time dedicated to educating the public about autoimmune diseases and the millions of people around the world who live with them. While awareness of diseases such as malaria, cancer, and diabetes is widespread in many countries, autoimmune conditions often remain misunderstood or overlooked, particularly in parts of Africa.

Autoimmune diseases occur when the body’s immune system mistakenly attacks its own healthy tissues instead of protecting them. These conditions can affect almost any part of the body—from the joints and skin to internal organs such as the kidneys, heart, or brain.

There are more than 200 known autoimmune conditions , including lupus, rheumatoid arthritis, juvenile arthritis, and vasculitis. These diseases may cause chronic pain, fatigue, inflammation, and long-term disability if not diagnosed and managed properly.

The Challenge of Diagnosis

One of the biggest challenges for patients living with autoimmune diseases is delayed diagnosis . Many individuals experience symptoms for years before receiving an accurate diagnosis. In some cases, patients may visit several healthcare providers before their condition is correctly identified.

The reason for this delay is often a lack of awareness. Symptoms such as persistent joint pain, unexplained fatigue, skin rashes, or recurring fevers may be mistaken for other illnesses. Without adequate knowledge among the public and healthcare systems, patients can struggle to find the right care.

Why Awareness is Important

Autoimmune Awareness Month highlights several important goals:

Education: Helping people understand what autoimmune diseases are and how they affect the body.
Early recognition: Encouraging individuals to seek medical attention when symptoms persist.
Support: Building stronger communities for people living with chronic illnesses.
Advocacy: Promoting improved access to diagnosis, treatment, and research.

In Ghana and across Africa, awareness campaigns play an especially important role because many people still believe autoimmune diseases are rare or nonexistent locally. However, healthcare professionals continue to report increasing numbers of patients presenting with conditions such as lupus and rheumatoid arthritis.

Living with Autoimmune Conditions

Although many autoimmune diseases currently have no cure, they can often be managed effectively with the right medical care, lifestyle adjustments, and long-term monitoring. Early treatment can reduce complications and help individuals maintain active, productive lives.

Patients living with autoimmune diseases often benefit from:

Early diagnosis and specialist care
Access to appropriate medication
Patient education and counselling
Peer support and community engagement
Healthy lifestyle choices such as balanced nutrition and stress management

Building a Stronger Support Network

Beyond medical treatment, individuals living with autoimmune diseases often need emotional and social support. Connecting with others who share similar experiences can make a significant difference in coping with chronic illness.

Support groups, educational programmes, and patient advocacy initiatives are helping to bridge knowledge gaps and empower patients with the information they need to manage their health effectively.

A Call for Greater Awareness

Autoimmune Awareness Month reminds us that these conditions deserve greater attention—from healthcare providers, policymakers, families, and communities.

Through education, research, and advocacy, we can help ensure that individuals living with autoimmune diseases receive the care, understanding, and support they deserve.

By increasing awareness today, we help build a healthier and more informed future for tomorrow.

Love in Action for People Living with Rheumatic Conditions

Sat, 14 Feb 2026 09:15:02 GMT

Valentine’s Day reminds us that love is more than words, it is care, patience, and support. For individuals living with rheumatic diseases, these qualities make a meaningful difference every day.

Conditions such as arthritis, lupus, and other autoimmune disorders often cause chronic pain, fatigue, and limited mobility. Beyond the physical challenges, many patients face emotional stress, financial pressure, and limited access to specialised care.

This February, we encourage communities to show love through awareness. Understanding that rheumatic conditions are long-term and often invisible helps reduce stigma and improves support for those affected.

Family members and caregivers play a vital role. Simple actions, assisting with daily tasks, offering encouragement, or accompanying loved ones to medical appointments, can greatly improve quality of life.

Community support is equally important. Early diagnosis, access to treatment, patient education, and public awareness campaigns help individuals manage their conditions effectively and maintain independence.

Valentine’s month is also a time to advocate. Supporting health initiatives, sharing educational information, and encouraging regular medical check-ups are practical ways to show care.

Love is strongest when it improves lives. By working together to raise awareness and expand access to rheumatology care, we can ensure that no one faces their condition alone.

Sleep & Rheumatoid Arthritis — Why It Matters This February

Mon, 02 Feb 2026 13:35:36 GMT

Today, February 2nd, marks Rheumatoid Arthritis (RA) Awareness Day , a key milestone within the global RA Awareness Month . While the entire month is dedicated to educating the public and supporting those with this chronic autoimmune condition, today serves as a focused call to action to recognize the lived reality of those it affects.

Rheumatoid arthritis goes far beyond joint stiffness and physical pain; it is a systemic challenge that impacts the immune system and overall quality of life. This year, the focus is specifically on the "invisible" side of the condition: sleep health.

Why Sleep Matters in Rheumatoid Arthritis

Sleep isn’t just rest, it’s a biological necessity for immune regulation, tissue repair, and emotional resilience. For people living with rheumatoid arthritis, sleep disturbances are extremely common and have a bidirectional impact on disease symptoms:

1. Sleep Disruption Is Widespread in RA

Research shows that:

A majority of people with RA report significant sleep problems, including poor sleep quality, insomnia, and fragmented sleep.
In one measurement, over 70% of RA patients were poor sleepers, far above what is seen in control groups without RA.

2. Pain, Inflammation & Sleep Loop

Persistent RA symptoms such as joint pain, stiffness, and inflammation make falling asleep and staying asleep difficult. Pain can:

Increase night-time awakenings,
Reduce the ability to reach deep restorative sleep,
Lead to a persistent cycle where pain worsens sleep disruption — and poor sleep amplifies pain and sensitivity.

This creates a vicious cycle: lack of sleep raises stress hormones and inflammatory markers, which can contribute to more frequent or severe disease flares and fatigue.

Biological Links: Sleep Physiology & Rheumatoid Arthritis

Scientific studies reveal deeper mechanisms at work:

Immune System & Circadian Rhythms

The body’s internal clock affects the immune system. In RA:

Inflammatory cytokines like IL-6 tend to peak at night, worsening stiffness and discomfort by morning.
Cortisol rhythms, important for controlling inflammation, can be disrupted, complicating the sleep-inflammation relationship.

These disruptions highlight that sleep health and immune regulation are intricately connected — making sleep a legitimate target for improving RA outcomes.

How Poor Sleep Impacts RA Beyond Pain

When sleep is consistently disrupted, the effects extend across daily life:

Fatigue intensifies, making physical and cognitive tasks harder.
Emotional wellbeing suffers, with higher rates of anxiety and depression linked to both RA and sleep problems.
Quality of life decreases, because of reduced activity levels, social engagement, and functional capacity.

Practical Ways to Improve Sleep with RA

Addressing sleep in RA requires a holistic approach:

Clinical Strategies

Talk to your healthcare provider about pain-relief strategies timed for evening relief.
Ask about screening for sleep disorders like sleep apnea or restless legs syndrome, which are more common in RA.

Sleep Hygiene

Good sleep habits can make a measurable difference:

Maintain a consistent bedtime and wake time.
Turn off screens well before bed to support natural melatonin production.
Create a calming sleep environment, cool, dark, and quiet, to support uninterrupted rest.

Lifestyle Adjustments

Light exercise and stretching earlier in the day can reduce stiffness at night.
Mind-body approaches such as meditation or gentle yoga help lower stress and improve relaxation before bed.

Connecting With Support & Community

Rheumatoid arthritis is more manageable when patients feel supported and informed. At tRi Ghana, we empower individuals, by educating about symptoms, connecting people with communities, and advocating for better care, which is especially crucial during awareness moments like February’s RA month.

Sleep isn’t a luxury, it’s an essential pillar of health. For people living with rheumatoid arthritis, understanding and improving sleep is not just about rest, it’s a strategic part of managing pain, reducing inflammation, and improving quality of life.

Today, on Rheumatoid Arthritis (RA) Awareness Day, we have a unique opportunity to amplify this message. By bringing focused attention to this topic during RA Awareness Month, we can help empower more people to break the cycle of pain and sleep disruption, and ultimately live better, more balanced lives.

Wishing Everyone Good Health and an Amazing 2026.

Thu, 01 Jan 2026 08:27:02 GMT

Dear TRI Community,

As the year 2026 starts, I'm reflecting on the remarkable progress we've made together.

2025 has been a year of growth, innovation, and impact for The Rheumatology Initiative. Your passion and dedication have propelled us forward, and I'm honoured to share some highlights.

We've fostered a vibrant community through monthly support groups, connecting individuals living with rheumatic diseases and healthcare professionals. Our observance of key awareness days – from Rheumatoid Arthritis Awareness Day to Lupus Awareness Month – has amplified critical conversations and advocacy.

Our initial research efforts have translated into meaningful publications and insights, driving change in healthcare disparities, access to care, and workforce development. And, we're thrilled to have launched RheumaConnect , our innovative app designed to bridge gaps in care and connect patients and health professionals with resources and expert support.

These achievements are a testament to the tireless efforts of our leaders, mentors, educators, and advocates. Your contributions have strengthened our community and expanded our reach.

As we navigate challenging times, our commitment to equity, resources, and inclusion remains unwavering. We'll continue to empower clinicians, support patients, and inspire the next generation of rheumatology leaders.

Let's step into the new year with courage, conviction, and a shared sense of purpose. Together, we're redefining the future of rheumatology and setting new standards for excellence in healthcare across Africa.

With appreciation and optimism,

The Rheumatology Initiative,

Director,
Prof Dzifa Dey

Christmas, Compassion, and Living with Rheumatic Conditions

Thu, 25 Dec 2025 10:00:14 GMT

Christmas is a time of compassion, generosity, and shared humanity.

For individuals living with rheumatic and musculoskeletal conditions in Ghana, the season can be both joyful and challenging. While celebrations bring comfort and connection, physical pain and limited mobility often remain daily realities.

Rheumatic diseases affect people of all ages, impacting joints, muscles, and overall quality of life. Many individuals face barriers to early diagnosis, specialised care, and affordable treatment. Awareness remains essential in ensuring that those affected receive understanding and support, particularly during festive periods.

Christmas encourages us to reflect on inclusion. Simple considerations — accessible seating, rest periods during gatherings, and understanding physical limitations — can make a meaningful difference for individuals managing chronic pain. Families and communities play a vital role in fostering environments of empathy and patience.

Education is central to improving outcomes. When communities understand rheumatic conditions, stigma reduces and support increases. Awareness campaigns, advocacy, and community engagement help ensure that those affected are not overlooked during celebrations or beyond.

Charitable initiatives during Christmas remind us that health equity matters. Support for rheumatology education, patient assistance, and healthcare access contributes to long-term improvements in lives across Ghana.

This season, Christmas becomes more than celebration; it becomes a call to compassion, advocacy, and action for better rheumatology care.

International Men’s Day

Wed, 19 Nov 2025 09:30:00 GMT

On International Men’s Day , we take a moment at The Rheumatology Initiative (tRi Ghana) to recognise an often-overlooked group: men living with autoimmune rheumatic diseases . Whether it’s rheumatoid arthritis, lupus, or other chronic conditions, men face unique challenges in both diagnosis and support.

Breaking the Silence on Male Rheumatic Conditions

Autoimmune diseases are often perceived as “women’s diseases,” but men are affected too. This misconception can delay diagnosis, as symptoms may be dismissed or misattributed. On this special day, tRi Ghana calls on everyone to raise awareness about rheumatic conditions in men, encouraging early screening and better education.

The Importance of Support

Living with a chronic disease is difficult—physically, emotionally, socially. For men, social stigma or cultural expectations about strength may make it harder for them to ask for help. tRi Ghana provides vital support through peer groups, education, and information, empowering men to seek help, share their experiences, and build resilience.

tRi Ghana’s Role

Since our founding in 2012, tRi Ghana has offered education, advocacy, and research into autoimmune rheumatic conditions. Our support groups, such as Rheusolute , create safe spaces for people—including men—to connect, share stories, and learn management strategies.

Our patient assistance programme also helps with financial and medical support, covering discounted medication and free medical consultations to ensure all patients—regardless of gender—receive care.

Encouraging Men to Advocate for Their Health

On International Men’s Day, we urge men to listen to their bodies: if you experience persistent joint pain, stiffness, or fatigue, don’t ignore it. Advocate for your health by seeking a rheumatologist, asking for blood tests, and joining a support network. At tRi Ghana, we welcome you with open arms.

Highlighting Role Models

This day, we celebrate men who courageously live with rheumatic disease and also those who support loved ones in their journey. Your bravery, openness, and perseverance inspire others—and drive our work.

How You Can Help

Raise awareness : Share stories of men affected by rheumatic conditions on social media, using #InternationalMensDay and #RheumaticHealth .
Support tRi Ghana : Donate to fund medication, research and patient support.
Join our community : Attend support groups for men, or bring a male friend or family member to a session. We meet monthly and welcome all.

A Message of Hope

To the men living with these conditions: you are not alone. tRi Ghana stands with you. On International Men’s Day, let’s acknowledge your strength—and commit to a future where your health is seen, valued, and supported.

Rheuma Connect: Transforming Rheumatology Care in Ghana

Tue, 14 Oct 2025 12:42:00 GMT

In a major leap for healthcare accessibility, tRi Ghana has launched Rheuma Connect , Ghana’s first digital platform dedicated to rheumatic and autoimmune disease management.

Bridging the Gap in Rheumatology Care

Rheumatic diseases often go undiagnosed for years due to limited specialist access and low public awareness. Rheuma Connect bridges that gap by linking patients, doctors, and caregivers in one digital ecosystem.

What Rheuma Connect Offers

Symptom Tracking : Patients can record joint pain, fatigue, and mobility patterns for better diagnosis.
Medication Reminders : Simple alerts to support treatment adherence.
Educational Resources: The app provides verified information on managing conditions like lupus, rheumatoid arthritis, and gout, empowering patients to take active roles in their care.
Community Support: Users can connect with others living with similar conditions, sharing experiences and encouragement in a safe space moderated by healthcare professionals.

Empowering Communities

tRi Ghana’s goal is not only awareness but empowerment. Through Rheuma Connect, patients gain knowledge, community support, and confidence in managing their health.

A Step Toward Equity

This innovation supports Ghana’s broader healthcare goals — ensuring that no one, regardless of location, is left behind in accessing specialist care. Rheuma Connect is more than an app; it’s a lifeline, a connection, and a vision for a healthier Ghana.

Raising Awareness on Rheumatic Diseases in Ghana

Mon, 01 Sep 2025 23:00:00 GMT

Rheumatic and musculoskeletal diseases are more prevalent in Ghana than many realize, often leading to chronic pain and disability. At The Rheumatology Initiative (TRI) Ghana, our mission is to bring hope and support to those affected by these conditions. Through education, advocacy, and patient support, we are working to improve the quality of life for countless individuals and their families.

Rheumatic diseases, such as arthritis, can impact anyone, regardless of age or background. A lack of awareness often leads to late diagnosis and inadequate treatment, compounding the challenges faced by patients. Our work focuses on closing this gap by providing accurate information, connecting patients with expert care, and offering support groups where individuals can share their stories and find strength in community.

By raising awareness, we can help people recognize symptoms earlier and seek the medical attention they need. We advocate for better access to rheumatological care across Ghana and work with healthcare professionals to enhance their knowledge and skills. Your support, whether through volunteering, donations, or simply sharing our message, is crucial.

Together, we can build a future where rheumatic diseases are no longer a silent struggle, but a manageable condition for all.

Understanding and Managing Rheumatic Diseases in Africa

Mon, 11 Aug 2025 12:30:00 GMT

Rheumatic diseases, which include conditions like rheumatoid arthritis, are a significant health challenge across Africa. They are often misunderstood and underdiagnosed, leading to delayed treatment and poor health outcomes. Educating the public and healthcare professionals is a crucial first step in addressing this issue. Awareness campaigns and educational programs are essential for helping people recognize the symptoms and seek help early.

For individuals living with these conditions, support extends beyond medical treatment. The chronic and often debilitating nature of rheumatic diseases means that patients also need emotional, psychological, and social support . A holistic approach to patient care is vital, providing resources and guidance to help individuals manage their condition and maintain a good quality of life. This can include establishing support groups where patients can connect with others who understand their journey, as well as providing access to patient assistance programs for treatment.

The work of dedicated organizations is key to building this support infrastructure. By bringing together a diverse team of professionals, from doctors and counsellors to community leaders, they can create a comprehensive network of care. Their efforts not only raise awareness but also build a resilient community for patients, offering hope and a sense of belonging. The ultimate goal is to empower individuals to live full and active lives, despite their diagnosis.

To learn more visit: www.trighana.org

Living with Juvenile Idiopathic Arthritis – A Guide for Ghanaian Families

Thu, 24 Jul 2025 06:05:15 GMT

For families in Ghana, receiving a diagnosis of Juvenile Idiopathic Arthritis (JIA) can feel overwhelming. Questions about treatment, lifestyle changes, and the future often come all at once. At tRi Ghana, we believe that knowledge is empowerment — and that children with JIA can thrive when families have the right tools and support.

The Emotional Journey

Hearing that your child has a chronic illness can be emotionally challenging. It’s normal to feel fear, sadness, or even guilt — but remember: JIA is nobody’s fault . Support from other parents and patient groups can make the journey less isolating.

Treatment Options

While there’s no cure for JIA, treatments can control symptoms and prevent long-term joint damage. These may include:

Nonsteroidal anti-inflammatory drugs (NSAIDs) to reduce pain and swelling
Disease-modifying antirheumatic drugs (DMARDs) to slow disease progression
Biologic agents for children who don’t respond to other treatments
Physical therapy to maintain flexibility and strength

Treatment plans should be tailored to each child’s needs, with regular check-ups to monitor progress.

Daily Life Tips for Children with JIA

Stay active – Low-impact activities like swimming or cycling keep joints moving.
Balanced diet – Anti-inflammatory foods such as fruits, vegetables, and omega-3-rich fish can help overall health.
Good sleep routine – Rest is essential for healing and energy.
School support – Teachers should understand your child’s needs, including rest breaks or adapted physical education.

The Role of Family and Community

Living with JIA isn’t just about medical care — it’s about creating a supportive environment where the child feels capable and included. Family encouragement, community understanding, and peer friendships all contribute to better outcomes.

JIA Awareness in Ghana

In many Ghanaian communities, awareness is still low. By talking openly about JIA, sharing information on social media, and attending tRi Ghana’s support events, you’re helping to break the silence and stigma.

Final Message

A JIA diagnosis is not the end of childhood dreams. With proper care, children can play, learn, and grow just like their peers.

This July, as we mark Juvenile Arthritis Awareness Month , let’s unite to ensure no child’s potential is limited by delayed diagnosis or lack of support.

Understanding Juvenile Idiopathic Arthritis – Shining a Light This July

Thu, 03 Jul 2025 05:59:40 GMT

Every July, the world comes together to raise awareness for Juvenile Idiopathic Arthritis (JIA) – a chronic condition that affects children and young people under the age of 16. In Ghana, awareness is especially important because rheumatic diseases are often misunderstood, underdiagnosed, or mistaken for temporary joint injuries.

What Is Juvenile Idiopathic Arthritis?

Juvenile Idiopathic Arthritis is the most common type of arthritis in children. “Idiopathic” means the cause is unknown, and “arthritis” refers to inflammation of the joints. JIA isn’t just about occasional aches — it’s an autoimmune condition where the immune system mistakenly attacks the body’s own tissues, leading to pain, swelling, and stiffness.

Common Symptoms

Persistent joint pain, swelling, or warmth
Morning stiffness that improves during the day
Fatigue and low energy
Eye inflammation (in some types of JIA)
Reduced physical activity or reluctance to walk/play

These symptoms may come and go, making it difficult for parents and doctors to identify the condition early.

Why Early Diagnosis Matters

If left untreated, JIA can cause joint damage, growth problems, and in some cases, long-term disability. Early diagnosis and treatment are essential for:

Preventing irreversible joint damage
Maintaining a child’s mobility and quality of life
Reducing the risk of complications such as vision problems

At tRi Ghana, we advocate for early screening , especially when symptoms persist for more than six weeks.

Breaking the Myths in Ghana

Many people believe arthritis is a condition for the elderly — this misconception leads to delayed treatment for children. Some also turn to unverified herbal remedies before seeking medical advice, which can delay effective care. Education is the first step in changing this narrative.

How You Can Help This July

Spread the word about JIA in your community.
Encourage parents to seek medical advice early if their child has persistent joint issues.
Support tRi Ghana’s awareness programs through donations or volunteering.

This July, let’s commit to making sure every child with JIA gets the diagnosis, treatment, and support they need to live a full and active life.

Growth, Support & Awareness at tRi Ghana

Wed, 02 Jul 2025 04:44:36 GMT

As we step into July, a time marked by brightness, warmth, and renewal, it also becomes a powerful reminder of the resilience required by individuals living with autoimmune and rheumatic conditions. At The Rheumatology Initiative (tRi Ghana) , July represents an ongoing commitment to awareness, empowerment, and holistic care across Ghana and the wider region.

While the sun rises high this month, so too do the voices of patients, caregivers, and healthcare providers advocating for early diagnosis, equitable access to care, and support for the invisible struggles faced by many.

�� A Season for Awareness and Reflection

July carries global significance in the rheumatology and autoimmune health space, particularly for conditions such as Juvenile Idiopathic Arthritis (JIA), rheumatoid arthritis (RA), lupus, myositis, and mixed connective tissue disease (MCTD). It is a time to reflect on the challenges of living with chronic pain and inflammation, and to raise awareness of early symptoms, such as persistent joint swelling, stiffness, fatigue, or unexplained fevers.

At tRi Ghana, this season reaffirms the need to educate communities, reduce stigma, and encourage people to seek medical advice early when symptoms arise. Whether it’s a young child struggling to play due to joint stiffness, or an adult navigating the complexities of long-term autoimmune care, every experience matters—and every story counts.

�� Strength in Support and Community

Living with a rheumatic or autoimmune condition can feel isolating, but no one should have to walk this journey alone. Community is a cornerstone of what tRi Ghana stands for. From support groups to shared experiences and patient networks, connection can be as powerful as medicine. Peer encouragement, emotional solidarity, and information-sharing all play vital roles in empowering individuals to manage their health and find hope in their journey.

Support networks also give a face and voice to often invisible illnesses, reminding society that while these conditions may not always show on the outside, they impact every part of a person’s life—from physical activity and employment to relationships and self-esteem.

�� The Power of Knowledge and Self-Advocacy

July is also a perfect time to recommit to education. Understanding the nature of autoimmune and rheumatic conditions—from what triggers flare-ups to how medications work—is essential for long-term care. Informed patients are better equipped to manage symptoms, communicate effectively with healthcare providers, and advocate for the support they need.

tRi Ghana continues to encourage access to educational materials that explain symptoms, diagnostic procedures, treatment options, and lifestyle tips tailored for conditions like lupus, RA, myositis, and more. Through reading, listening, and learning, patients and families grow stronger and more confident in managing the path ahead.

�� A Reminder of the Systemic Impact of Autoimmune Conditions

Autoimmune conditions don’t just affect joints or skin—they impact the entire body. From cardiovascular risks to mental health concerns, and from eye complications to oral health, the systemic nature of these diseases demands a multidisciplinary approach to care.

This July, it’s important to remember the importance of regular health monitoring, comprehensive wellness planning, and integrative strategies that look beyond pain relief to overall quality of life. That includes attention to diet, rest, mental well-being, and physical therapy—tools that make a meaningful difference in disease progression and daily function.

�� Ongoing Commitment to Holistic Support

At the heart of tRi Ghana’s mission is the drive to ensure that care is not limited to prescriptions and diagnoses but is extended to the emotional, financial, and social needs of patients. Autoimmune diseases often come with recurring costs, missed work or school days, and significant stress on caregivers.

A holistic approach means acknowledging those realities and working collaboratively with patients and families to find sustainable solutions. It means building bridges between patients and providers, between science and society, and between challenges and opportunities.

�� Looking Ahead with Hope and Purpose

July is not just a midpoint in the calendar year—it is a powerful moment to pause, reflect, and realign. It is a time to amplify the voices of those living with rheumatic and autoimmune conditions, to encourage awareness and empathy in our communities, and to push for continued innovation and support in healthcare access across Ghana and beyond.

At tRi Ghana, this month serves as a quiet reminder that every step taken—no matter how small—is progress. Whether you are a patient, a parent, a healthcare provider, or a friend, your role matters in building a future where autoimmune and rheumatic conditions are met with understanding, compassion, and competent care.

This July, may we all embrace the strength of community, the light of knowledge, and the hope of better health. Together, we move forward.

Visit www.trighana.org to learn more, explore resources, or join the movement for awareness and empowerment.

When Answers Finally Came: Living with Lupus from a Young Age

Tue, 10 Jun 2025 05:27:29 GMT

I started getting sick at a pretty young age. In class four, I was quite slow, always sick with 'fever/malaria'. My doctor at the time said I was not a Sickler, so he did not understand what was wrong. I was dealing with stomach ulcer, and then by class five, joint involvement came in. I learnt to cope with my condition, including learning to write with my left hand, in case my right couldn't, to keep up with school. The pain kept rotating from right to left, and vice versa. Everywhere hurt all the time, and schooling became difficult.

My skin joined the train with scaly rashes, reddish sores, and bad 'dandruff sores' in my hair, making it fall off. I eventually cut it short by JSS. It was during one of my visits to my dermatologist at the time, now late, who realized my general weakness and joint aches, that he referred me to his daughter, a physiotherapist. She handled me for a while, but I guess she detected there was an underlying problem. So, she too referred me to a consultant physician. After many labs, scans etc., were done, I was diagnosed with rheumatoid arthritis, and then, juvenile rheumatoid arthritis due to my young age at the time.

When I eventually entered senior high school, I could only endure a term in the boarding house. So, doctors advised that I stay in a day school in order to get proper care at home. I was managing quite well until final year, when things got terribly bad, and I had to miss the first term to be admitted in the hospital. It was during this time in the hospital that SLE was finally diagnosed. All in all, it took about 8 (eight) years for me to be finally diagnosed with SLE in 2008.

Living with lupus for all these years has taught me to be very thankful to God always, and to appreciate everything, though bitter sometimes; but with Christ in the vessel, I smile at the storm.

A Renewed Commitment to Rheumatic Health Awareness

Sun, 01 Jun 2025 11:58:30 GMT

As we step into the month of June, we’re presented with a new opportunity to shine a spotlight on often overlooked yet deeply impactful health conditions — autoimmune and rheumatic diseases. These chronic illnesses affect millions globally and thousands right here in Ghana, silently shaping the lives of individuals, families, and communities.

Autoimmune and rheumatic conditions such as lupus, rheumatoid arthritis, scleroderma, and vasculitis are frequently misunderstood, misdiagnosed, or dismissed due to a lack of awareness. Their symptoms — including chronic pain, fatigue, joint stiffness, and inflammation — can be invisible to others but profoundly life-altering for those who live with them. Many patients go years without answers, often feeling isolated, unheard, and unsure of where to turn for help.

Awareness is the critical first step in creating change. When we take the time to educate ourselves and our communities, we open the door to empathy, earlier diagnoses, and more effective treatments. Public education campaigns, health screenings, and accessible information about symptoms and treatment options can lead to timely interventions and better quality of life for those affected.

Support networks — from in-person support groups to online communities and educational workshops — are essential in helping patients navigate their journey. These platforms not only provide emotional reassurance but also serve as hubs of valuable medical knowledge, connecting individuals with expert care, new treatment options, and research developments.

This June, we are renewing our commitment to raising awareness and advocating for those living with rheumatic diseases. Let us amplify their voices, break down the stigma surrounding chronic illness, and push for inclusive healthcare policies that ensure no one is left behind.

Together, we can build a society that is informed, compassionate, and equipped to support individuals living with these conditions.

Join the movement for rheumatic health awareness.

Learn more, get involved, and make a difference at www.trighana.org

Apotica Supports tRi Ghana with Donation to Advance Healthcare Access

Wed, 28 May 2025 12:20:46 GMT

Apotica Supports tRi Ghana to Advance Healthcare Access.

tRi Ghana is proud to announce a generous financial contribution of GHC100,000 from Apotica Company Limited , a significant gesture that reinforces the power of partnership in improving healthcare delivery and patient education across the country.

This timely support comes at a critical moment as tRi Ghana continues to expand its healthcare programs aimed at increasing access to essential medical information, early intervention services, and patient-centered care. The donation will directly strengthen ongoing initiatives that focus on community outreach, health education, and support services for individuals living with chronic and complex health conditions.

Access to reliable health information and quality care remains a major challenge for many communities. Through this partnership, tRi Ghana will be better positioned to extend its reach to underserved populations, organize more educational programs, and provide practical resources that empower patients and caregivers to make informed health decisions.

At the heart of tRi Ghana’s mission is the belief that education saves lives. Many health conditions can be better managed, or even prevented, when individuals understand risk factors, symptoms, treatment options, and lifestyle adjustments. With Apotica’s support, the organization will intensify its awareness campaigns, community screenings, and patient engagement activities, ensuring that more people receive the knowledge and support they need.

The contribution also reflects Apotica Company Limited’s strong commitment to corporate social responsibility and its dedication to strengthening the local healthcare ecosystem. By investing in community-based health initiatives, Apotica is helping to build a more resilient medical landscape, one where prevention, early diagnosis, and patient empowerment play central impact roles.

Speaking on the partnership, representatives from tRi Ghana expressed deep appreciation for Apotica’s confidence in the organization’s work and vision. Strategic collaborations with private-sector partners are essential for sustaining and scaling health programs that directly impact lives. Support of this nature enables the organization not only to maintain existing services but also to innovate and expand into new areas of need.

Beyond the immediate financial value, the partnership represents a shared commitment to long-term, sustainable health outcomes. It highlights the importance of collaboration between healthcare stakeholders, corporate institutions, and community organizations in addressing public health challenges.

The donation will support several key operational areas, including:

Expansion of community health education and awareness campaigns
Development and distribution of patient education materials
Strengthening outreach programs in underserved communities
Supporting program delivery logistics and coordination

As tRi Ghana continues its work to bridge healthcare gaps, partnerships like this play a transformative role in driving measurable impact. Every outreach session conducted, every patient educated, and every community engaged brings the organization closer to its goal of improving health outcomes and quality of life for people across Ghana.

tRi Ghana extends its sincere gratitude to Apotica Company Limited for its generosity and vision. Together, we are building stronger communities, empowering patients, and advancing a future where access to health education and care is not a privilege, but a right.

This collaboration stands as a powerful reminder that when organizations come together with a shared purpose, lasting change becomes possible.

Strength in Struggle: An Ode to Mothers Battling Autoimmune Diseases

Sun, 11 May 2025 16:30:19 GMT

Motherhood blossoms from an unwavering love, nurtured by boundless patience, and fortified by a fierce protectiveness that knows no limits. Now, imagine weaving into this already intricate fabric the often-invisible threads of an autoimmune disease. For mothers living with conditions like lupus, rheumatoid arthritis, multiple sclerosis, or countless others, each day presents a unique set of challenges that demands extraordinary resilience. They navigate chronic pain, fatigue, and a body that sometimes turns against itself, all while nurturing and caring for their families. Their strength is not just admirable; it's a profound testament to the human spirit.

At tRi Ghana, we stand in awe of these incredible women. We witness first-hand the quiet battles fought behind brave smiles, the careful balancing acts between managing debilitating symptoms and meeting the relentless demands of motherhood. This Mother's Day, as the world celebrates the nurturing spirit, we want to shine a special light on the mothers within our communities who face each day with unparalleled courage and unwavering grace, embodying the very essence of strength in struggle.

Their journey is often marked by invisible wounds, misunderstood symptoms, and the added burden of advocating not only for their children but also for their own health. They become fierce warriors in navigating complex healthcare systems, seeking accurate diagnoses, and fighting for treatments that allow them to be the mothers they long to be. They are the unsung heroes who educate their families, raise awareness within their communities, and inspire others living with autoimmune conditions to never give up hope.

This Mother's Day, let us move beyond simple acknowledgments and truly recognize the depth of their experience. Let us offer not just words of encouragement, but tangible support and understanding. This could mean offering a helping hand with daily tasks, actively listening without judgment, or simply acknowledging the invisible battles they face. By fostering a community of empathy and knowledge, we can create a more supportive environment where these mothers feel seen, heard, and empowered.

tRi Ghana is deeply committed to supporting these remarkable women. Our work strives to improve access to information, resources, and healthcare that can make a tangible difference in their lives. We believe that by raising awareness about autoimmune diseases and advocating for better healthcare infrastructure in Ghana, we can empower these mothers to thrive, not just survive.

This Mother's Day, we invite you to join us in this vital mission. Let us amplify their voices, share their stories, and offer a collective embrace of understanding and support. Let us acknowledge the profound strength that blossoms in the face of adversity and celebrate the incredible mothers who, despite their personal battles, continue to pour their love and energy into shaping the next generation. Their resilience is a beacon of hope, inspiring us all to face our own challenges with greater courage and compassion.

#MothersDay2025 #AutoimmuneAwareness #StrongMoms #GhanaHealth #TRIGhana #InvisibleIllness #SupportMothers #Resilience #HealthcareForAll #EmpowerWomen

My Journey to Wellness

Mon, 07 Apr 2025 08:00:01 GMT

The Beginning: Unanswered Questions.

My journey to wellness has not been an easy one. It started with strange symptoms—tight skin, extreme fatigue that didn’t go away even after sleep, and changes in my appearance. My skin changed colour, my nose grew longer, and my lips became so small I had to use a teaspoon to eat. The exhaustion was unbearable; after eating, I had to rest before even washing my hands. People called me lazy, not knowing I was dying inside.

No mother would sit back and watch her daughter suffer. My mum and I visited hospitals across Accra, Kumasi, Koforidua, and the Central Region, but no doctor could give us answers. One even said I had leprosy, sending us into a panic. But I refused to accept that.

Then, in 2015, everything got worse. A stroke attack changed my face so drastically that mirrors became forbidden in my house. My pictures were taken down. And as if that wasn’t enough, my mother—the pillar of my life—passed away. One month later, I had my first shortness-of-breath attack at 2 AM and was rushed to Family Health Hospital in Teshie. There, a doctor who had trained under Dr. Dey took one look at me, put me on oxygen, and ordered autoimmune tests.

That was the moment my life changed.

The Diagnosis: Systemic Scleroderma with Pulmonary Fibrosis

The results were in—systemic scleroderma with pulmonary fibrosis, an autoimmune disease. I still remember my sister’s face. I had just lost my mum. How was she going to tell me this? All she could do was cry.

When I finally asked her, “Am I going to die too?” she had no answer. A physician sat me down and explained that my illness was chronic but manageable, only at Korle-Bu by a rheumatologist.

I was devastated. I felt betrayed by God.

What happened to all my sacrifices? My prayers? Did He even care?

But looking back, my fears weren’t just about the diagnosis. It was about the financial burden, losing my independence, and not knowing where this new journey would lead. It scared everything out of me.

Seven Years Later: A Woman of Faith and Resilience

It’s been seven years now, and I stand here as a woman filled with faith, hope, and aspirations. With Jehovah’s help, I’ve learned to accept my condition and embrace the new me. He has provided for me in ways I can’t explain.

Living with a chronic illness is tough, but it has made me adapt. I’ve learned to:

✔ Know myself better

✔ Engage in less stressful activities

✔ Take one step at a time

✔ Surround myself with positive people

The tRi support group has been a huge blessing—emotionally and financially. I’ve met friends who understand my struggles and love me unconditionally. And I’m forever grateful to Dr. Dey and Dr. Doe, who always show up for me.

I still remember when I had a panic attack at the hospital. I was too weak to walk, so I called Dr. Doe. Minutes later, I saw him coming from the third floor, carrying my folder himself. All he said was, “Linda, I understand your situation.” I had never felt so seen and loved.

Pain, Strength, and Survival

Yes , I have seen pain. I have lived with it. But pain has made me stronger.

I know fear. I know loneliness. I know frustration. I know the loss of friendships, relationships, and even the loss of self.

But I also know that I am surviving—through the One who gives me power.

I am hard-pressed but not crushed.

I am perplexed but not in despair.

I am knocked down but not destroyed.

I didn’t choose this illness. Life happened. But I choose to live it out beautifully.

Scleroderma took my looks but not my happy personality.

To everyone battling silently, never let go of Jehovah. Keep fighting. Love, pray, laugh, hope, and live one day at a time.

People look at me and call me an epitome of Jehovah’s grace. And you know what? I believe them.

World Health Day: Promoting Sustainable Development for Healthier Communities

Mon, 07 Apr 2025 01:42:15 GMT

Health and sustainability are two sides of the same coin. As we observe World Health Day , it’s essential to recognize that our health is deeply intertwined with the environment around us. From the air we breathe to the water we drink and the cities we live in, sustainable development plays a pivotal role in shaping public health outcomes.

At the core of sustainable development is the idea that today’s progress should not come at tomorrow’s expense. When we implement eco-friendly infrastructure, promote clean energy, and protect natural resources, we also protect our health—especially for vulnerable populations, including those living with chronic conditions such as rheumatic diseases.

�� How Sustainability Impacts Public Health

Clean Water and Sanitation Access to safe drinking water and proper sanitation reduces the risk of waterborne diseases. Sustainable water management practices help ensure long-term availability and protect communities from contamination.
Air Quality and Pollution Control Air pollution is one of the leading environmental risks to health, contributing to respiratory illnesses, cardiovascular disease, and more. Investing in renewable energy, public transportation, and emission control drastically reduces these health hazards.
Green Urban Planning Cities that include green spaces, walking paths, and bike lanes promote physical activity, reduce stress, and lower pollution. Urban design that encourages outdoor activity is particularly beneficial for managing conditions like arthritis and other rheumatic diseases.
Climate-Resilient Health Systems As climate change continues to impact global weather patterns and disease distribution, building resilient healthcare systems becomes vital. Sustainable health facilities—powered by solar energy and built with eco-friendly materials—can serve communities even in the face of natural disasters or resource shortages.
Sustainable Food Systems Encouraging the production and consumption of local, nutritious, and sustainably grown food improves both personal health and environmental outcomes.

�� What Can We Do?

Support Eco-Friendly Policies : Advocate for green infrastructure, clean energy projects, and sustainable healthcare funding.
Raise Awareness : Educate your community about the links between sustainability and health.
Live Responsibly : Conserve water, reduce waste, and use environmentally safe products in your daily life.

On this World Health Day, let’s remember that health isn’t just a personal matter—it’s a collective responsibility. Sustainable development isn’t a luxury; it’s a necessity for ensuring long-term well-being for ourselves and future generations.

️ Learn more about how sustainability impacts health at www.trighana.org
#WorldHealthDay #SustainableHealth #HealthyFuture #PublicHealth #ClimateAndHealth #Rheumatology #tRiGhana

My Life with MS: A Journey of Resilience

Thu, 13 Mar 2025 09:00:02 GMT

Beginnings and the First Signs.

I went to Legon (University of Ghana), but honestly, I didn’t really want to be there. My love was art, but school felt like something I just had to do. While I was there, I started experiencing some weird triggers—intense pins and needles in my body—but I brushed it off. The pain would come and go, so I figured I was good.

Corporate Stress and a Life-Changing Accident

After Legon, I worked in a bank as a relationship officer in corporate banking on the Asia and Middle East Desk. My daily routine involved a lot of “Xie Xie” and “Ni Hao”—handling international clients, managing accounts, and basically navigating high-pressure work in multiple time zones. Stressful as hell.

Then, a week before Christmas in 2013, I had an accident coming back from work. That was the turning point. According to the doctor, the accident either triggered my MS, or I had already been misdiagnosed with Myasthenia Gravis.

Six months after the accident, I had to leave the bank by mutual consent. My body wasn’t feeling right, and my mind too. I didn’t tell my family immediately because I felt guilty—like I was letting them down. Eventually, I told them and decided to focus on school, so I enrolled in a Business Administration program at GIMPA. Still not my passion, but it was something.

Caregiving While Declining

During that time, my dad had a serious health issue. Suddenly, I found myself playing the role of an ad hoc nurse, even though my own physical state wasn’t great. I remember one night at the hospital when no nurses responded to our calls. I had to carry him from his bed to the bathroom. To this day, we both agree that was a miracle of gargantuan pro max proportions.

As my Dad started getting better, I started getting worse. But it wasn’t until 2019, when my cousin (really my big sis, who’s an angel) came down from the U.S. and saw how bad things were, that I finally got answers. She arranged for me to see a neurologist over there, and in December 2019, I was officially diagnosed with MS. I started infusions every six months (Rituximab).

Through it all, I received the best of care, no matter the cost. My family and loved ones made sure I got what I needed—medically, emotionally, and financially. They never hesitated. No shortcuts. Whatever it took, they made it happen. That level of sacrifice? It’s something I’ll never take for granted.

Seclusion and Darkness

One of the first major symptoms that hit me hard was optic neuritis—a condition that made me extremely sensitive to light. I had to stay in the dark most of the time, away from screens. My love for football dimmed a bit, too, because watching matches became difficult. But honestly, Manchester United and the Black Stars haven’t made me miss much, so I’m good.

Lol, people also had jokes— “Sewell can’t see well no more.” And you know what? Even I had to laugh at that one.

Prophecies, Silence, and the Last Meal Question

Of course, with everything happening, people around me saw this as a spiritual attack. I kept getting invited (sometimes dragged) to prayer camps. Pastors would show up at my place. One even told me he saw a vision of me dying on May 5, 2020.

That day was something else. I was already exhausted—mentally, emotionally, physically. So I just looked the man dead in the eye and asked, “ What exact time? Morning or evening? Should I be having my last breakfast or lunch? ”

To be fair, the pastor did make us pray against it. But the specific nature of what he said stuck in my head for a long time. I ended up being in the U.S. on “the day,” and let’s just say every action I made was done with extreme intentionality.

That whole experience really showed me something though. My friends were all there when the prophecy was made. And when I turned to look at them, they were silent. Not one of them objected. They just stared at me while I looked at them incredulously, waiting for someone to call out the nonsense.

But no—it was just me against the room.

That was the moment I fully realized—people will believe what they want to believe, even if it means watching their friend accept a death sentence from some random man of God.

But I hold no malice toward them. They were doing the best they could at the time, trying to make sense of something none of us fully understood. We were all just navigating it the best way we knew how.

MS: The Duet You Never Asked For

MS will play with your mind—keep it hanging, let you cuss at yourself, and laugh at the same time. It’s like a constant battle. Or let’s say, a duet. Sometimes you win. Sometimes too, you take the L . And if you don’t take the L with grace? Na you do your body, because no one cares. It will build your inner strength ( I wish that strength manifested in my physique though… just saying ) . But it’s all good.

The Mental Game: Brain Fog and Regret

If there’s one thing MS has done, it’s malfunction my brain in the most ridiculous ways.

Brain fog? That’s an understatement. I’ll make decisions—sometimes impulsively, sometimes thinking I’m completely in the right—only to later realize I was completely wrong.

Sometimes it’s immediate. Sometimes it’s days or weeks later. But here’s the real kicker—pride won’t always let me accept what I’ve done. Even when I know deep down that I messed up, owning up to it feels like a fight against myself.

It’s frustrating. It makes relationships—friendships, family, work—all harder to navigate. Because MS doesn’t just affect my body; it plays chess with my mind, making me question my own decisions, reactions, and sometimes even my memory.

One minute, I think I’m making sense. The next, I’m replaying a conversation and realizing, “Wait… that didn’t go the way I thought it did.”

I’ve had to learn to slow down. To pause before reacting. To step back and ask myself, “Is this me, or is this MS acting up?” It’s an ongoing lesson, but I’m learning.

Faith, Doubts, and Seeing Through the BS

My faith was tested—no lie. “It is well” became a phrase I heard way too often, and after a while, I started interpreting it as a way for people to close a conversation because it was too awkward.

But here’s the thing—through all of this, I actually became less religious and more spiritual. I stopped chasing after signs and started focusing on a real relationship with God. No theatrics, no middlemen, just me and Him.

Oh, and guess what? I’m a Sunday school teacher now. Lol, who would have thought? The same me that was side-eyeing pastors? Now I’m here teaching kids about faith. Life is funny like that.

Moving Forward

Passion turned profession. I jumped into the creative scene, and I have a lot of plans—written and unwritten. Kids have to be a part of it because they are one of my passions.

And as for my social life? I wasn’t exactly a party animal, but I was around. I enjoyed being with people, showing up, vibing. So yeah, getting back into the world is a process, but I’m making moves.

One thing I know for sure? God and I, we get move. E no source yet, but till then, I’ll not be having any last meals anytime soon.

A Twist of Fate: My Complex Autoimmune Story

Tue, 11 Mar 2025 14:43:45 GMT

My journey to diagnosis has not been an easy one and when I was finally diagnosed with SLE, Myositis with a twist of mixed connective tissue disease in 2013, I didn't know how my life would be.

When I started having increasing levels of pain, I thought it was due to the mixed connective tissue disease (MCTD) until my rheumatologist diagnosed me with fibromyalgia between 2014 and 2015 after several complaints about the pain radiating all over with body. My joints would at times be so painful I couldn't even take a shower. I required assistance to put on my underwear and dress up.

I remember days when my mum and aunty would dip face towels in scalding water that they could barely put their hands in to just squeeze the water on various parts of my body. At times they would resort to ironing the towel after making it damp and put it on areas where I was hurting whilst I cried out in pain. They were shocked at times because I wouldn't even flinch when they placed those scalding towels on my body. They wondered how I could tolerate that level of heat.

In fact, I tolerated the heat more than the cold, I would stay in bed bundled up from head to toe and yet be feeling cold. I refused to spend time in our living room unless all windows were closed and curtains drawn and down. Everyone would be feeling hot but I would be shivering. There were days I couldn't chew because my jaws hurt so I could only feed on liquids. I had little or no appetite anyway. Life was a living hell.

Now I would say I have learnt and adapted to living with fibro, I chose to be useful to myself and my family.

My doctors have helped with medications and other management techniques. There have been several trials with different combination of medications with its associated side effects, desired or not. My years on corticosteroid has in combination with other treatments led to associated increase in weight, issues with my vision which is being closely monitored by my ophthalmologist.

One thing I should have mentioned earlier on was once you are diagnosed with an autoimmune disease, others follow.

I started having issues with my gut so I was referred to see the gastroenterologist. Getting diagnosed with Microscopic Colitis was no fun, mainly because of the colonoscopy. During the procedure i was not sedated enough so the procedure was hell on earth. Thus now, I see the gastroenterology team.

I had suffered from migraines in my teens, which resurfaced, that and other complaints of pains led me to being referred to the neurologist as well.

All these referrals came with tests, medications and others which put a strain on my finances. Most often than not you experience new symptoms and with each one comes different responses. All of these take a toll on your emotions and mental health.

As I mentioned earlier, you learn to adapt, or else your mental health suffers. Even after living with it and all the other diagnosis, it is still not easy. There are good days and bad days. Some days I can't do anything because I am physically incapable. Every day presents with it a challenge, from migraines to gut issues and the pain that never goes away.

Whenever I am going out of the house, I ensure to pee several times right until when I leave home or else I will have the urge to pee right in the middle of the journey to wherever I am going and if I don't find my way to a washroom early enough, I am likely to have wet pants. I have had several such accidents. So now I carry extra underwear and at times I carried an adult diaper just in case.

Even in adapting, it never gets easier and you never get used to it. There are days I get tired of it all and it weighs heavily on me. I have learnt to self-motivate and being part of a support group has helped me greatly. Getting the perspectives of others and listening to their stories lets you know you are not alone in this fight.

It's not all doom and gloom. I have met some amazing people because of all of these diagnosis and associated problems. I have also learnt a lot from them, they have become a second family I can fall back on because they understand what it is to live with fibromyalgia and all the other autoimmune diseases.

Celebrating Ghana's Independence: A Journey of Resilience and Unity

Thu, 06 Mar 2025 10:48:14 GMT

On March 6, 1957, Ghana emerged as the first sub-Saharan African nation to attain independence, marking a pivotal moment in the continent's history. This day symbolizes the unwavering spirit, resilience, and unity of Ghanaians in their pursuit of self-determination.

The Essence of Independence

Independence Day is not merely a commemoration of political freedom; it embodies the collective aspirations of a people determined to shape their own destiny. The iconic words of Dr. Kwame Nkrumah, Ghana's first Prime Minister and President, resonate profoundly: "Ghana, your beloved country, is free forever." This declaration ignited a sense of pride and responsibility among Ghanaians, inspiring them to contribute meaningfully to nation-building.

Triumphs and Challenges

Over the past 68 years, Ghana has made significant strides in various sectors, including education, healthcare, and infrastructure. However, the journey has not been without challenges. Economic fluctuations, political transitions, and social issues have tested the nation's resilience. Yet, through it all, the Ghanaian spirit of perseverance and unity has prevailed, driving continuous progress.

Health Sector: A Reflection of Independence

A nation's health is a cornerstone of its development. In Ghana, the healthcare sector has evolved, reflecting the country's commitment to improving the well-being of its citizens. Organizations like tRi Ghana exemplify this dedication. As a non-profit entity, tRi Ghana focuses on education, advocacy, and research into autoimmune rheumatic conditions in Ghana and Africa. Their efforts aim to uncover causes and cures for these conditions while providing support to affected individuals and their families.

tRi Ghana's Contributions to Healthcare

tRi Ghana has initiated several projects to enhance healthcare delivery:

Heralding Education in Autoimmune Rheumatic Disorders (HEARD) Campaign: This initiative educates and raises awareness about autoimmune rheumatic diseases using animated videos and communication materials in multiple languages, including English, French, and local dialects such as Ewe, Twi, Ga, and Hausa.

RheumChat : A toll-free telemedicine service (*844*555*3#) designed to screen individuals for autoimmune rheumatic conditions and direct them to the nearest partner health centre, thereby improving access to care across the country.

The Path Forward

As Ghana celebrates its 68th Independence Day, it is an opportune moment to reflect on the nation's health priorities. Investing in healthcare infrastructure, supporting medical research, and fostering collaborations between governmental and non-governmental organizations are crucial steps toward a healthier future. The work of organizations like tRi Ghana underscores the importance of community-driven initiatives in addressing health challenges.

Independence is an ongoing journey, marked by collective efforts to overcome challenges and build a prosperous nation. As we commemorate this day, let us honour the resilience of our forebears by committing to initiatives that promote the well-being of all Ghanaians.

Through unity and dedication, we can continue to advance the health and prosperity of our nation.

Autoimmune diseases - When the body fights itself.

Mon, 20 Jan 2025 06:02:44 GMT

I struggled to explain to the gentleman who brought his wife to the clinic what an autoimmune disease is, as against his strong belief in a spiritual source of his wife’s illness. I could understand his sceptical look as he looked at me as if to say, “All these, and you say it’s not spiritual!!”. As an African, with our natural belief in the spiritual and supernatural, the thought of a disease that is caused by the body attacking itself understandably begins to sound mystical.

So, what are autoimmune diseases?

The word “auto” is a Greek word meaning self.

Your body’s immune system protects you from disease and infection. But if you have an autoimmune disease, your immune system cannot differentiate between your body's healthy and harmful cells. The immune system becomes overactive and attacks and destroys the healthy cells by mistake. It does this by producing substances called antibodies that target the body’s tissue.

Autoimmune diseases together constitute the fourth largest cause of death among women. It affects more people than heart disease. It is poorly understood, poorly recognised and of apparent increasing incidence worldwide, including Ghana . There is, therefore, a need to raise more awareness about such diseases as they can cause a lot of damage both physically and psychologically to both patients and their caregivers.

What causes it?

Autoimmune disorders are still one of the big medical mysteries, and though scientists are still trying to decipher what causes it, they believe an interaction of genes and the environment is to be blamed. Some run in families, but most appear without warning or clear cause.

A few recent studies suggest that overeating salt can predispose you to have autoimmune diseases such as multiple sclerosis, and smoking causes rheumatoid arthritis, adding evidence to the belief that lifestyle choices and other environmental factors are behind the rise.

Genetics

People with autoimmune diseases are predisposed to develop an overreactive immune response. Even with a genetic tendency, a person may not develop an autoimmune disease without an environmental influence or physical trauma to set it off.

Environmental

Despite the genetic predisposition, most people would not develop the disease until there is an environmental trigger that sets the over active immune system off. These environmental influences include:

Infections : Bacterial or viral. Initial theories suggested parasitic infections may be protective, hence the low incidence in Africa, where such infections have abound in the past.
Drugs : certain drugs are known to trigger off some diseases e.g. drug-induced lupus may be triggered by some antibiotics or antihypertensive drugs
Toxins , including petroleum products and pesticides, have been implicated in causing some diseases.
Sex : autoimmune conditions tend to have a female preponderance, about 75% of all cases may be women. These are usually pubertal or of childbearing age, so hormonal factors are thought to be a cause.
Stressful life events can also trigger these conditions.

Some diseases and potential triggers are listed;

Lupus : hair dye and certain drugs, smoking
Scleroderma : silica exposure
Diabetes : gluten, coxsackie virus
Rheumatoid Arthritis : Infections, smoking
Thyroid : smoking
Multiple Sclerosis: hepatitis B infection

Classification:

They can affect only one organ, e.g., Diabetes mellitus type 1, where the pancreas is affected, leading to reduced or absent insulin, which is needed to process sugar; Graves disease, where it affects the thyroid gland; or multiple sclerosis, where the covering of the nerves in the brain and spinal cord is affected, leading to episodes of nerve dysfunction causing blindness, limb weakness, etc.

It could also be systemic, that is, more widespread, affecting many organs at once or sequentially, e.g., Lupus, Rheumatoid arthritis, and polymyositis, which can affect organs such as the joints, muscles, brain, kidneys, and lungs.

Symptoms and signs:

This would depend on the organ affected, but common symptoms include:

Malaise, fatigue, rashes, hair loss, febrile illness, recurrent miscarriages, visual impairment, joint swellings or pain, memory loss, limb weakness, strokes.

Diagnosis:

This depends on:

Accurate history of the illness
Physical examination by the doctor
High index of suspicion

Investigations:

It is important to understand that there is no particular test (with a result that is either positive or negative) that can confirm or deny a diagnosis of an autoimmune disease. The doctor must consider the patient’s medical history and all other signs and symptoms being experienced. This would probably vary depending on the system involved.

When you have an autoimmune disease, your body produces antibodies against some tissues. Diagnosing an autoimmune disease involves identifying which antibodies your body is making, such as Antinuclear antibody tests (ANA). This autoantibody test looks for antinuclear antibodies, which attack the nuclei of cells in your body.

Treatment

There is currently no cure for these chronic autoimmune conditions. Controlling the progression of the disease and decreasing the symptoms, especially during periods of increased activity are the main goals of treatment and disease management. If you have an autoimmune disease, you and your doctor will have to work together to create a plan to manage your symptoms.

Treatment methods depend on the disease, but in most cases one main goal that is common to most autoimmune diseases is the reduction of inflammation.

The treatment of autoimmune diseases is typically with immunosuppressive medications, which are used to reduce the hyperactive immune reaction.

Facts About Autoimmune Diseases in Ghana

1. Prevalence and Gender Disparity

Globally, autoimmune diseases disproportionately affect women, and Ghana is no exception. Approximately 75% of people with autoimmune conditions are women. This gender disparity is not fully understood, but underscores the need for healthcare providers to be particularly vigilant in monitoring women for signs of autoimmune diseases. However, the lack of widespread knowledge about these conditions means that many women suffer in silence or are misdiagnosed and men may be diagnosed late.

2. Challenges in Diagnosis

One of the most significant challenges facing autoimmune patients in Ghana is the difficulty in obtaining an accurate diagnosis. On average, autoimmune patients see four different doctors over a three-year period before they receive a correct diagnosis. This prolonged period of uncertainty can lead to worsening symptoms and a decline in quality of life. The lack of specialized healthcare professionals, such as rheumatologists, exacerbates this issue. With only three rheumatologists serving a population of 29 million Ghanaians, access to specialized care is severely limited, making early diagnosis and treatment even more challenging.

3. Increasing Prevalence

Over the past two decades, there has been a noticeable increase in the number of people diagnosed with autoimmune conditions in Ghana. The reasons for this rise are not fully understood, but it is suspected that environmental factors, lifestyle changes, diet, and increased life expectancy may play roles. As more Ghanaians live longer, they may be more likely to develop chronic conditions, including autoimmune diseases.

4. Severity and Life-Threatening Risks

Autoimmune diseases can become life-threatening, particularly when they are not diagnosed until significant organ damage has occurred. In Ghana, late diagnosis is a common issue due to a lack of awareness among both the medical community and the general public. Patients are often diagnosed at advanced stages of the disease, when irreversible damage may have already been done. This highlights the urgent need for better education and training for healthcare providers and increased public awareness.

5. Misunderstanding and Stigmatization

Autoimmune disease patients often appear outwardly healthy, leading to their symptoms being ignored or dismissed. Because many autoimmune conditions have symptoms that are not visible, patients may appear healthy despite being severely ill. As a result, their symptoms are frequently dismissed as being "in their heads" or attributed to stress. A worldwide survey found that 62% of autoimmune patients had been labelled as chronic complainers or were told they were overly concerned with their health in the earliest stages of their illnesses. This stigmatization can delay diagnosis and treatment, leading to worse outcomes. In some communities in Ghana, autoimmune diseases are mistakenly attributed to witchcraft, curses, or supernatural causes. This belief can lead to stigma and discrimination against those affected by these conditions.

6. Access to Care

Access to adequate care is another significant challenge for autoimmune patients in Ghana. Many patients must travel long distances and endure extended wait times to see a specialist. This is particularly true for those who need to see a rheumatologist, as the shortage of these specialists means that patients may have to wait months for an appointment. The combination of long travel distances, high costs, and extended wait times can be overwhelming for patients, particularly those who are already dealing with the physical and emotional toll of their illness.

The Role of the Rheumatology Initiative (tRi)

The Rheumatology Initiative (tRi) is a non-governmental organization in Ghana that supports people living with autoimmune diseases and increases awareness about these conditions. Founded by Dr. Dzifa Dey, a rheumatologist, tRi has become a beacon of hope for many patients who would otherwise struggle to find information and support.

tRi focuses on several key areas: patient education, advocacy, and research. The organization provides educational resources and run support groups to help patients understand their conditions and manage their health, share experiences and find comfort in knowing they are not alone. They also advocate for better healthcare policies and access to treatment for people with autoimmune diseases in Ghana.

Through workshops, seminars, and social media campaigns, tRi is actively working to dispel myths and educate the public about autoimmune diseases. These initiatives are crucial in a country where misinformation and stigma can have devastating effects on the lives of those affected by autoimmune diseases.

For more information reach tRi at www.trighana.com , @trighana on all social media platforms.

Autoimmune Diseases: Your Questions Answered

Tue, 14 Jan 2025 21:52:10 GMT

1. What are Autoimmune Diseases?

It is simply disease conditions that occur when the immune system gets confused and attacks healthy parts (organs and cells) of the body.

2. What are the types of autoimmunity?

Particular autoimmune disorders are frequently classified into organ-specific disorders and systemic types. Autoimmune processes can have various results, for example, slow destruction of a specific type of cells or tissue, stimulation of an organ into excessive growth, or interference in its function. Organs and tissues frequently affected include the endocrine gland, such as thyroid, pancreas, and adrenal glands; components of the blood, such as red blood cells; and the connective tissues, skin, muscles, and joints.

In organ-specific disorders, the autoimmune process is directed mostly against one organ. Examples, with the organ affected, include Hashimoto’s thyroiditis (thyroid gland), pernicious anaemia (stomach), Addison’s disease (adrenal glands), and type 1 diabetes (pancreas).

In systemic disorders, autoimmune activity can affect multiple organs of the body. Examples include rheumatoid arthritis, systemic lupus erythematosus (SLE or lupus), and dermatomyositis.

3. Who can get it?

Anyone and everyone with an immune system is at risk. Though women of childbearing age are more commonly affected. Individuals of any age and either sex may be affected by an autoimmune disease. Some autoimmune diseases such as rheumatoid arthritis and autoimmune diseases of the thyroid gland are most commonly seen in older individuals. However, many of the autoimmune diseases such as lupus and multiple sclerosis are most common in women between the ages of twenty to forty

4. Why are autoimmune diseases more common in women than men?

The answer to this question is not yet fully available. It is likely that hormones play an important role, but a number of other factors have been implicated. It should be noted that while most autoimmune diseases are more prevalent in women, a few such as Type 1 diabetes, ankylosing spondylitis and autoimmune myocarditis are actually more common in men. It seems likely, therefore, that there will be multiple reasons for the sex related bias in autoimmune disease.

5. Is it contagious?

No. It cannot be transmitted from person to person by sharing anything, neither is it airborne.

6. Is it hereditary?

Neither is it entirely hereditary. You can’t passed it on to your child. The chances of doing that is about 5%, though because of a similar genetic that is shared in a family, you are likely to see other autoimmune diseases which may not necessarily be the same in each person. This tendency may be large or small depending on the disease but, in general, close relatives are more likely to develop a related autoimmune disease. A number or genes have been connected with causing autoimmune disease, primarily genes related to the human major histocompatibility complex called HLA.

7. How do you get it?

The exact cause has not been found out yet, but many factors could trigger it. It is believed to be a combination of a genetic predisposition to react to things in the environment called antigens e.g. chemicals, stress, infections etc This happens in someone whose genetic makeup makes his immune system more likely to overreact to the least provocation.

8. Does it have a cure?

No, currently it has no cure , but it can be properly managed with medication and proper medical support and lifestyle changes to attain a resemblance of normal life.

9. Can women who have autoimmune conditions give birth?

Yes. Childbirth is possible and can be safe as well, when planned with the proper medical management and monitoring; a woman who has an autoimmune condition can have a healthy baby carried to full term.

In certain situations your doctor may caution you to wait until the condition is stable before planning a pregnancy e.g. if you have kidney, lung or any major organ involvement or the condition is active.

10. Where can one seek treatment?

The Hospital.

Since autoimmune diseases vary greatly in presentation, many different physician specialists care for patients with these disorders. The specialist is usually skilled in treating diseases of a particular system. Treatment for this condition is multi-disciplinary which means different health specialists will work to manage it. Eg physiotherapist, nephrologist etc. but primarily a Rheumatologist is the specialist for diagnosing, treating it and coordinating the care and need for other specialists.

A Rheumatologist is a specialist doctor who deal mainly with medical conditions affecting joints, soft tissues, autoimmune diseases, auto inflammatory and heritable connective tissue disorders. It can be truly said that physicians of any specialty may encounter patients with autoimmune disease.

11. Is it a time bomb?

Not anymore. With proper management and supportive treatment one may live to a ripe old age if you are diagnosed early and treated properly so there is no organ damage.

12. How many autoimmune diseases are there?

There are over 80 different types of autoimmune diseases that affect different parts of the body. New diseases are being added to the list frequently.

13. Can it be prevented or are there vaccines for it?

No unfortunately until scientists find the exact cause there is no determined preventive measure. However certain factors have in recent times been identified to aggravate or cause the condition and dealing with these may help reduce impact of the condition or in future prevent their development. eg Factors known to help include Increase vitamin D intake, reducing stress, healthy diet with fresh fruits and vegetables, reduce salt and processed foods, probiotics, reduce antibiotic use especially in children, etc.

14. Is it common?

Yes. It is more prevalent than previously thought.

Studies show that the incidence of autoimmune diseases is rising, but scientists are not sure why this is happening. Although the exact cause of autoimmune disorders is unknown, it is common among young to middle-aged women.

According to the latest research published by Mayo Clinic researchers, a woman's lifetime risk for acquiring autoimmune disease is around eight percent, while a man's risk is at five percent. This means that one in twelve women, and one in twenty men may develop an autoimmune disorder. It is a rising global problem.

15. Is it life threatening?

Yes, if left untreated properly 25 to 50% of people will end up with organ damage and death

16. Why are autoimmune diseases so expensive?

Generally, autoimmune diseases continue for the lifetime of the patient. They require continual or intermittent care. At this time definitive cures for the autoimmune diseases are not available. Often the drugs used for treating these diseases are quite expensive as well as the laboratory tests for them.

17. What is the Rheumatology Initiative, tRi?

The Rheumatology Initiative Tri, is a non-profit organization. tRi was founded in 2010 to increase awareness about autoimmune diseases. Today it has grown to become the premiere national organization on the forefront of autoimmune disease awareness, treatment, research, advocacy and patient information.

18. What are the goals of tRI?

The Rheumatology Initiative’s goals are set forth in our Mission Statement: tRi is dedicated to the eradication of autoimmune diseases and the lessening of psychosocial and the socioeconomic impact of autoimmunity through advocacy, fostering and facilitating collaboration in the areas of education, public awareness, research, and patient support services in an effective, ethical and efficient manner.

Please find us on www.trighana.com

19.How is tRi funded?

tRi receives one hundred percent of its annual funding requirements from contributions and donations made by people such as yourself and our initiatives. We are proud that we provide significant services with very low overhead. At tRI, over 95% of all contributions are used for education, advocacy and patient support and research services. We are able to accomplish this efficiency because we are primarily volunteers who run the organisation.

RHEUM WITH A VIEW- Perspectives on Rheumatological conditions

Tue, 12 Nov 2024 06:10:39 GMT

Rheum What?

Rheumatology is a branch of medicine devoted to diagnosis and treatment of rheumatic diseases. But no we don’t deal with only old ladies with bad knees. And it’s not “sickle cell rheumatism” either. Our form of rheumatism affects both young and old alike.

The prefix “rheuma,” meaning “flux” or “to flow,” was first used by a Greek physician 2000 years ago, referring to the flow of phlegm, but rheumatology has nothing to do with the flow of phlegm either !

Physicians who specialize in rheumatology are called rheumatologists. Rheumatologists deal mainly with medical conditions affecting joints, soft tissues, autoimmune diseases, autoinflammatory and heritable connective tissue disorders. These are a wide variety of illnesses that may affect many different organs. Most of these diseases do not have a well-defined cause which makes rheumatology an interesting field to study. You have to be adept in all specialties of medicine.

Immune system and the joints?

Rheumatology is progressively more becoming the study of immunology that is how the body’s immune system (the defence mechanism of the body) works.

Many diseases are now known to be disorders of the immune system including narcolepsy (excessive sleeping) and even infertility may have an autoimmune basis.

Autoimmune diseases occur when the body’s disease fighting cells gets confused and attacks itself instead of defending it. Some of these are very serious diseases that can be difficult to diagnose and treat because of the lack of awareness about these conditions. While autoimmune conditions are not well known or understood, it is far more common than better known diseases such as leukaemia, sickle cell disease, breast cancer and HIV all combined. Without early diagnosis and treatment, they can be severely devastating, even deadly.

There are more than 100 types of rheumatologic diseases, including autoimmune diseases like rheumatoid arthritis, systemic lupus erythematosus (lupus), psoriatic arthritis, spondyloarthro-pathies, polymyalgia rheumatic, Sjogren’s syndrome, antiphospholipid syndrome, scleroderma; and vasculitis; musculoskeletal pain disorders; back and neck pain, tendinitis, bursitis, nerve impingements (sciatica, cervical radiculopathy, carpal tunnel syndrome); osteoarthritis; osteoporosis and osteopenia; gout; fibromyalgia; and Lyme arthritis, as well as problems related to musculoskeletal system such as sports related soft tissue disorders.

What to expect?

In the coming weeks in this column which I have rechristened “Rheum with a View”, I would collaborate with The Rheumatology Initiative, tRi Ghana, a non-profit organisation dedicated to providing education, advocacy and research into the autoimmune rheumatic conditions to increase awareness, provide information, tips and the latest advances in the care of people with autoimmune rheumatic diseases, with special focus on young and adolescent persons with these conditions.

We shall share with you on the column, education on Rheumatologic conditions, stories of people living with these conditions and tips and useful information to get a solid grasp on handling daily living with these conditions to thrive.

Come and let’s get a view on a Rheumy side of the world.

2024 EULAR Congress Experience

Tue, 02 Jul 2024 10:13:08 GMT

The EULAR Congress of Rheumatology 2024, held from 12 ^th to 15 ^th June, 2024 in Vienna Austria, gathered leading experts, researchers, and practitioners in the field of rheumatology from around the world. The event provided a platform for the exchange of scientific knowledge, the presentation of research findings, discussions on the latest advancements in rheumatology, and the inclusion of the patient’s perspective in rheumatology. The Rheumatology Initiative ( tRi ) offered me the opportunity to represent them at this prestigious congress and I am grateful for the opportunity.

As a member of the International PARE Working Group representing tRi, I took turns to man the PARE booth with my colleagues from the committee, explaining what PARE does and more specifically the role of the IPARE committee inviting participation from patient groups around the world, ensuring that everyone’s voice is heard and considered. When I wasn’t at the booth, I attended sessions that I believed would be beneficial to our work at tRi.

My attendance at the EULAR Congress 2024 provided a number insights and opportunities for The Rheumatology Initiative:

Knowledge Enrichment : Updates on the latest research and treatment approaches will inform decision-making and strategic planning for tRi.
Collaboration : Networking with experts and leaders of other patient organizations opens avenues for potential collaborations in research, clinical initiatives and sharing of best practices.

The EULAR Congress of Rheumatology 2024 was a great event for tRi because it offered valuable knowledge, networking, and collaboration opportunities that we can make use of. The insights gained will contribute to advancing our mission of education, advocacy, and conducting research into autoimmune rheumatic conditions in Ghana and Africa, and caring for people living with these conditions.

Meet Our Lupus Warriors

Mon, 20 May 2024 06:33:50 GMT

As part of our lupus awareness month we shall share some of our stories of HOPE.

Meet Baaba, Our warrior.

My journey started in 2010 on the University of Cape Coast campus when I was in my final year, few weeks to start my end of first semester exams. It started with Malaria symptoms, joint pains and swellings of the feet, wrists and elbows. I went to the hospital and was given malaria treatment and ointment for the swells. After some few days there was no improvement but rather got worse so I reported back to the hospital where I was made to run some lab tests. The results couldn’t show anything wrong so I was just given pain killers and discharged.

I endured the pain to write my exams although it wasn’t easy with the extreme fatigue and constant headaches. On completing my exams my mum came to pack my stuff and sent me to Takoradi where we lived.

Each day of my stay home was hospital visits and appointments with different doctors and numerous lab tests. After several months there was still no diagnosis and the situation was not getting any better. My dad advised us to try herbal medication where we visited about three different herbal hospitals and also spiritual centres but all to no avail.

School reopened after some months but I couldn’t go because I was not any better. I was advised by my parents to defer my program for the next year but that was the last thing I wanted to do so I didn’t agree to it but decided to fight hard and try and complete my final semester with my colleagues. I pleaded with them and convinced them to take me to campus to register and bring me back home which they agreed. I didn’t want to communicate with my friends and colleagues because I felt very bad about myself anytime I tried to. I just kept contact with one close friend who was not even a course mate from whom I could get much information because I could trust her and she understood me.

During this period I was being taken from one Prophet to another to seek spiritual help since all the hospitals and herbal centres didn’t help. When it was time for exams I was taken to school to write the exams although I couldn’t study for exams and didn’t know what was covered and my colleagues also thinking I had deferred my programme. I sat for the exams and passed my exams by the grace of God with the little efforts I put in and was able to graduate with my mates.

After graduation in 2012, my sister decided to bring me to Accra to seek medical attention since she believed there would be a positive result trying in Accra. She took me to Nyaho Clinic where I was made to do series of tests again and the only thing noticed was blood and protein in my urine which was subject to further investigation. A different set of tests was done but nothing was noticed so I was referred to a Physician Specialist in the same hospital and on the very first appointment was diagnosed with Rheumatoid Arthritis based on the symptoms presented but I was asked to run some tests for confirmation, and when the results were ready after two weeks my diagnosis was confirmed to be Systemic Lupus.

I felt a little relieved when my diagnosis was confirmed because at least I knew what was wrong with me. But upon hearing Lupus had no cure but can just be managed I felt shattered, I felt there was no hope. The doctor explained and after reading about it I decided to have hope, stay positive and fight on for my life. The doctor told me there was a special clinic at Korle-Bu for SLE patients so I was referred to Korle-Bu where I met Dr. Dey and Rheusolute family and they made me feel having Lupus was just not the end but there was so much to live for.

I am so happy getting into contact with the Rheusolute team because they make me feel at home and they are always ready to listen and advice.

Living with Lupus has made me adapt a lot of life style changes; you always have to get a backup plan since plans can change at any time. I had to learn to know myself better, engage in less stressful activities, eat healthy and take one step at a time. Be positive at all times and keep people with positive mindset around you.

The journey with Lupus hasn’t been an easy one. Waking up every morning with pains all over and extreme fatigue, taking dozens of medications on daily basis is not easy to deal with. But accepting that this is what I have to deal with, and working towards remission makes it easier to carry it out with less stress.

Lupus can be life threatening especially when there is an organ involvement. In my case my two kidneys have been destroyed by Lupus and I’m now living on my kidney reserves and will be depending on a machine soon, as I prepare for a kidney transplant.

It’s not an easy task waking up every morning and thinking of how to raise over USD50,000 in few months for a kidney transplant but I believe there is still hope despite all I am going through and I’ve been through.

I still fight on and will continue to fight on. Even at this stage I still go about my normal activities, go to work on daily basis, carry out all duties expected of me and live my life as anybody else. Am sure if I don’t tell you about my condition you wouldn’t know.

Lupus didn’t cause any change of career plans but affected my timing, and I believe everything happens for a reason. I’m currently a final year MBA student studying finance and a Banker as well, hoping to study Law soon after my graduation.

I will not allow lupus to destroy my plans but will continue to fight hard and pursue my dreams. With God by my side and my family especially my sister being my pillar of strength, I know I will make it.

I’m very grateful for the family support emotionally and financially. They were always ready to provide me with every kind of support I have needed from onset and this is what has kept me till date.

I’m not giving way for Lupus to define my life, I will make it and I am making it.

Rheumatoid Arthritis Awareness Month

Fri, 02 Feb 2024 06:21:21 GMT

The Rising Pheonix GRASP WARRIOR STORIES

February is dedicated to creating awareness on Rheumatoid Arthritis simply referred to as RA. To climax the month of raising awareness, I share with you some stories of people living with Rheumatoid arthritis.

Margaret

My name is Margaret . I am 36 years old, a pharmacist and married with 2 children. I have been living with RA since 2002. It all started on my journey back home (Accra) from KNUST. On arrival at the Achimota station, I experienced intense pain running through my entire body.

Discovering that I had RA was not a straight forward route (it never is). It was in 2005 that I had a diagnosis after several hospital visits, prayers and varied lab tests and x-rays. Taking medication became a great struggle for me after diagnosis. My knowledge of medicines’ side effects often made me non complaint. This led to osteoarthritis that makes me limp. I have done several sections of physiotherapy and visits to the chiropractor to help with the pain.

The symptoms of RA affect my energy levels. I need good rest often. I struggle to walk long distances. I used to move from bed to work and back to bed. Then it got to the roller coaster stage when I had periods of good health and terrible flares.
Once I begun faithfully taking all my medicines, courtesy the tRI family and our wonderful Dr, I have become more active and independent now. I am able to keep up with more activities. I am seriously working towards remission. I can say I am enjoying the life God has gifted to me.

Thanks to my awesome class mates and study group members (KNUST, BPHARM 2003 class) who were always supportive.
My family and in-laws refuse to see me as ill or disadvantaged. Their expectations haven't changed and it has helped me to strive to be the best I can be.
My mum remains my number one caregiver. Thank you mummy!

Many thanks to my husband who has been extraordinarily supportive. Caring for me through the worst and best of times. God has been faithful and has kept us. We can only get better.
Thanks also to my bosses and colleagues at work , and a few angels whom God has positioned in my life to support me always in all areas. For this, I am always thankful.
We need support like this to help us manage this condition and live life to the full.

As we raise awareness about this condition, I want everyone to know that RA is not a death sentence. It will not lead to immobility if treated with the right medicines as soon as symptoms are correctly identified. Healthy living, medication and emotional support for people living with chronic illnesses are sure paths for them to reach remission.
Medicine is a means by which God heals us all. Do not push patients with uncommon illnesses to go off their medication. It often worsens their condition.

I will like to encourage anyone going through a similar situation to believe that God is real and no matter what, He is with you so never ever give up. Remain positive and be an inspiration to others. Through this experience, I have turned some of my weaknesses into strengths. God has exceptionally favoured me through all the pain, so that instead of being gloomy I choose to be a #RAyofSunshineThroughThePain.

Saada

My name is Saada , a Senior Stenographer in secretariarship and a student at Chartered Institute of Bankers. I have a small super market I am managing. I have also enrolled in a bridal and cosmetology school. I am 31 years old and diagnose with Rheumatoid Arthritis for almost 2 years.

Living with RA is not something one will wish for anybody because it comes with a lot of pain, and without the help and support of family and friends, it makes it even worse. When I was first diagnosed at 37 Military Hospital, I thought I was the only one, and this made me cry almost every minute until I met doctor and my Rheusolute family. I realised God has a reason for everything.

Rheusolute has taught me to take every step at a time. I am living my life normally by taking my medications, doing all my lab tests, and visiting my doctor regularly. RA definitely won't stop us. We will beat it and survive.
I am a #RAyofSunshineThroughThePain.

Pearl

Pearl is my name and I am living with Rheumatoid Arthritis. I just turned 27 years and this is my story.

I am a young girl who loves to be herself and do the things I love to do best. Currently, I hold a degree in Accounting and graduated from the University of Professional Studies in the year 2014. It is my dream to become a Fashion Consultant but for now I am working with one of the leading IT firms as a Pre-Sales Executive- Finance.

While growing up, I thought some diseases only attacked the AGED. Little did I know the young could be attacked as well until I was diagnosed of one, that is, Rheumatoid Arthritis (RA).
It all started 4 years ago. I experienced serious allergies, my eyes were always puffy and hurting. I kept treating it as an eye problem and normal allergy but I began to feel unusual pain in my knees and I had to bandage them often. I also developed back pains once a while. I still thought it was just the normal joint pains that will come and go often associated with the weather.

One day, a friend advised that I saw a doctor which I considered, after almost 2 years of enduring the pain. A series of tests were run. Some came out normal while others showed symptoms of Arthritis. Then, on one of my review days, It was finally confirmed that I have Arthritis and needed to see a specialist. I was then referred to another hospital. Since I knew nothing about the disease, I started reading about it.

Upon my research, I found out that Rheumatoid Arthritis is a chronic progressive disease causing inflammation in the joints and resulting in painful deformity and immobility, especially in the fingers, wrists, feet, and ankles and it is an autoimmune disease, meaning my BODY'S IMMUNE SYSTEM attacks and destroys healthy body tissue mistakenly which results in the pains I feel often. What I read was pretty scary. The specialist I met at Korle-Bu told me though it couldn't be cured, it could be well managed.

When these pains occur, my knees become swollen and warm; also, my fingers get swollen and hurts and becomes almost non- functional. It’s quite a painful experience and I became a burden to others because within that period I was handicapped. There were few times I cried and asked myself if I could ever be happy with someone without the person thinking less of me.

I am grateful to my family and friends who have been supportive.
When I finally met the specialist, she explained to me further assuring me it could be managed through constant reviews and taking my medications religiously. She advised that I join a group of young people living with RA.
Though my journey just begun, I must say I am pulling through and the support group is equally very helpful.

As part of the awareness creation process, I want to make my age mates aware that it's possible to be diagnosed of the disease. I strongly advise that if any one feels any unusual pain and symptoms similar to what I had, he or she should see the doctor immediately. There is no room for assumptions like I did.

Franklin

Living with a chronic disease like Rheumatoid Arthritis, commonly referred to as RA, is no joke. I was a very active sports person (ball games and athletics) until RA knocked on my door in 2014.

I had been experiencing the symptoms of joint aches, swelling, stiffness, fever and fatigue for a good part of that year without getting the correct diagnosis. Then on the eve of November 2, 2014, I experienced pain I have never had before. They say the pain a woman experiences during childbirth can be likened to the pain of breaking 20 bones in an adult (hey, I didn't say it oo ask them). For a sports person, imagine the pain from a dislocated ankle, shoulder or wrist, and multiply that by 20. That's the closest description I can give you to the level of pain I experienced that night. This went on from 9pm to the following day. I did not sleep a wink. To minimise the pain, I had to lay halfway to the side and stay in that exact position till morning. Any other position I tried to assume would have been used against me in ‘RA's court of pain’.

My brother had to literally carry me to the hospital. A triple dose of pain killer injections did not work. To say it was terrible is an understatement. I could not hold a spoon, toothbrush or cup. I walked and acted like a stroke patient. The pain was intermittent for the next five months before I was finally properly diagnosed of having RA at the Rheumatology Clinic, Korle- Bu, by our loving Rheumatologists (I see you doc, thanks a mill for having our backs).

I now live with the realisation that I can't be actively involved in the sporting activities I loved so much. My life is now plagued with severe aches and pains manageable only by daily medication and some unpleasant lifestyle changes. It's astonishing the amount of money we spend monthly on drugs and medical tests, trying to live the semblance of a normal life, but God sees us through.

Do not be deceived, we may look and act okay on the outside, but you don't want to know what's happening inside. Even getting out of bed is sometimes a struggle. The good news is that although the old Franklin was burnt by the flames of RA, like a Phoenix, a new Franklin was reborn from the ashes.

What keeps me going is my faith in God that He can do the impossible, a show of concern and understanding from friends and family, a support group ( Rheusolute ) like no other, and the hope of going into remission, while waiting for a cure to be found.

We are not asking that you have pity on us, no, that will only weaken our resolve. Rather, we ask that you understand and encourage us when we are not at our best. This will help boost our morale and like the mystical phoenix, we’ll keep rising high till we hit remission or till a cure is found; whichever comes first.

My name is Franklin , and I am a #RAyofSunshineThroughThePain

Marivic

My name is Marivic. In the year 2007, I started suffering from joint pains and it became serious in the year 2009 so I was admitted at Korle Bu Teaching Hospital for two months. During my admission, I was diagnosed with Juvenile Idiopathic Arthritis (JIA) which is a chronic remitting and relapsing autoimmune disease.

Before I was diagnosed with JIA, my family thought it was something spiritual so I was taken to different kinds of churches for my healing and also to go back to school but still there was no improvement and it was rather getting worse. I lost all hope and thought I would die because it got to a time I was not able to talk more so to move. After I was diagnosed and discharged from the hospital, I realize my life had changed because I was not able to do some of the things I used to do just because I wanted to avoid having a flare up.

Now, by the help of God, my doctor and my drugs, I am able to control having continuous flare ups.
I just hope and pray that one day God will heal me completely.

RA is not a visible disease. Many of our warriors endure so much pain but in silence. They act brave as if everything is fine, but there is a serious war going on underneath all the brightness. Sharing our stories ensures that vital information is spread for support from the public and to encourage warriors to war on and stick to their prescribed treatment plan, in order to get to remission.

You can also create awareness about RA by wearing a GRASP wristband. To purchase a wristband, kindly send us a message on Facebook or Twitter, or call +233 544 089056 and arrangements would be made to get them to you.

You can also make a donation towards our cause using the following details:

Account name: The Rheumatology Initiative

Account number: 0083024480808601

Bank : ECOBANK Ghana

Branch : Dansoman Branch

Swift : ECOCGHAC

Routing : 132112

Mobile Money : 0544089065

Monies donated go to assist patients in critical conditions who need lifesaving medications but cannot afford it.

For further information kindly contact us at:

(Website: www.trighana .com, Email: trighana@gmail.com / Call: +233 544 089056)

Thank you in advance for your support.

Lupus in the Kidney: What are the dangers and what can be done about it?

Wed, 19 Jan 2022 08:14:37 GMT

As part of the awareness raising efforts for the just ended Lupus Awareness month, I would continue with a very important complication of that disease- Lupus nephritis. This is important as its one of the common causes of chronic kidney damage in young people.

What is Lupus Nephritis?

Systemic lupus erythematosus (SLE, or, more commonly “lupus”) is an illness in which the immune system begins attacking its own self. Normally, the immune system helps protect the body from infection or harmful materials. But in patients with an autoimmune disease, the immune system cannot tell the difference between harmful substances and healthy ones, resulting in the immune system attacking otherwise healthy cells and tissue.

Lupus nephritis is one of the most severe complications of lupus. It occurs when SLE causes the immune system to attack the kidneys. The kidneys are important for the body’s function. They remove waste from the blood, which would otherwise accumulate and cause illness and other metabolic disturbances. People with damaged kidneys might have to get regular dialysis. This is a procedure in which waste products in the blood is cleaned by a filtration machine. Some may require kidney transplantation.

Research suggests that about 50% of people with SLE suffer from lupus nephritis. SLE is most common in women ages 20 - 40. Anybody with lupus can potentially have kidney involvement, but people with lupus who have antibodies to double stranded DNA (anti-dsDNA) and low complement proteins ( particularly C3) and patients of African, South American or Asian descent have increased risk and should be watched more carefully for warning signs.

Symptoms

Lupus nephritis symptoms are similar to those of other kidney diseases. They include:

dark urine
blood in urine
foamy, frothy urine
having to urinate often at night
puffy feet, ankles, and legs that gets progressively worse as the day goes along
gaining weight
high blood pressure

Blood Tests

Kidney function tests may show elevated levels of waste products, such as creatinine and urea.

24-Hour Urine protein Collection

This test measures the kidney’s ability selectively to filter wastes. It determines how much protein appears in urine over 24 hours.

Urine Tests

They identify levels of Protein, red blood cells, white blood cells and casts in the urine.

It is important to ascertain if the protein is from renal disease as some drugs that are commonly used in lupus such as ibuprofen or naproxen can cause reversible protein in the urine. Dehydration, excessive exercise, toxins, diabetes and many other conditions can also cause protein urine .

Ultrasound

This is done to look at the size and shape of the kidney and determine whether there is evidence of damage to the kidneys

Kidney Biopsy

Biopsies are the most accurate way to diagnose kidney disease. A long needle is passed through the back and into the kidney and a sample of kidney tissue is taken and analysed for signs and type of damage in the laboratory.

Often, protein in the urine is the first sign of lupus in the kidney. If no other cause is found for it and if the protein does not go away on rechecking it is very vital to get a kidney biopsy as soon as possible. This is because getting treated for lupus nephritis as soon as possible after it is noticed is very important, and without a proper diagnosis the wrong treatment could be given. Even within the spectrum of lupus, there are different forms of nephritis.

It is also essential to get a biopsy to ascertain if there is already kidney damage before treatment is initiated. This determines if there is chronic damage or active disease ad is rated on a scoring system called a chronicity scale. If there is already damage to the kidney, it is more difficult to get the best results with treatment. On the other hand, if there is no chronicity, it suggests that the nephritis was caught early and then chances of success with treatment are very good.

Treatment:

There is no cure for lupus nephritis. The goal of treatment is to keep the problem from getting worse and stopping kidney damage early.

Treatment modalities include:

minimizing intake of protein and salt
lowering cholesterol levels
taking blood pressure medication
using steroids to reduce immune system damage to the kidneys.
other medications that suppress the immune system, such as cyclophosphamide, mycophenolate mofetil, or azathioprine and newer medication like Rituximab.

Complications

The most serious complication associated with lupus nephritis is kidney failure. People with kidney failure will need either dialysis or a kidney transplant. Dialysis may be needed to control symptoms of kidney failure, sometimes for only a while.

Hope for the future

Currently, there are new diagnostic tests being developed in the hopes that in future, kidney biopsies can be avoided, and accurate diagnosis and treatments might be started even earlier. There are also some potentially powerful new treatments in development. There is even some hope that some new drugs that are being made to reduce scarring in tissues might in the future be used to reverse chronicity that has already occurred in the kidney.

In the meantime, the key to dealing with lupus kidney disease effectively is knowing if you might be at higher risk, getting regular monitoring, early diagnosis and treatment.

2018 ACR/ARHP Annual Meeting

Fri, 02 Nov 2018 11:05:33 GMT

I was invited to represent the Rheumatology Initiative, at the American College of Rheumatology (ACR) and the Association of Rheumatology Health Professionals (ARHP), 2018 ACR/ARHP Annual Meeting. which was held at McCormick Place in Chicago, Illinois on October 19–24, 2018.

The ACR/ARHP Annual Meeting is the largest rheumatology meeting in the world and is a premier educational event for physicians, health professionals, and scientists who treat or research rheumatic and musculoskeletal diseases.

More than 15,000 rheumatology professionals from over 100 countries attended the meeting to discuss and review the latest rheumatology innovations, research, and clinical applications.

I had the opportunity to present an abstract on "Making a Difference in the Lives of People with Autoimmune and Rheumatic Conditions in Ghana" and participate in an interview with CreakyJoints (creakyjoints.org). It was also a valuable chance to network and exchange experiences with other presenters sharing patient perspectives.

I am thankful to the Rheumatology Initiative for providing me with this opportunity.

Lupus Facts: what you should know

Wed, 02 May 2018 08:07:34 GMT

May is Lupus awareness month.

Systemic lupus erythematosus, commonly called lupus, is a chronic autoimmune disease. Lupus causes inflammation which affects the skin, joints, kidneys and other organs. Patients with the disease have to receive treatment from a medical specialist like a rheumatologist. In severe cases, lupus can cause kidney failure, heart attack and stroke.

Lupus is more common than many people realize. It affects over 5 million people worldwide which is much more than many other diseases that get more attention.

I will share some facts about lupus to help us know more about this complex condition.

LUPUS FACT 1

Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body.

LUPUS FACT 2

In lupus, something goes wrong with the immune system, the part of the body that fights off viruses, bacteria, and germs becomes hyperactive. This results in the production of autoantibodies and immune complexes that cause inflammation.

LUPUS FACT 3

Ninety percent of the people who develop lupus are women, though men can also develop lupus and their disease can affect some organs more severely.

LUPUS FACT 4

Lupus commonly develops between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these tend to have serious health complications.

LUPUS FACT 5

People of African descent, Hispanics/Latinos, Asians, Pacific Islanders, and Native Americans are diagnosed with lupus two or three times more frequently than Caucasians; however, lupus can affect people of all races and ethnicities.

LUPUS FACT 6

Lupus is not contagious and cannot be “given” to another person.

LUPUS FACT 7

To diagnose lupus, doctors evaluate a patient’s current symptoms, lab test results, personal medical history and family medical history.

LUPUS FACT 8

Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints and skin.

LUPUS FACT 9

The malar, or “butterfly” rash on the face is present in about one-third of people with lupus. This is a flat rash across the bridge of the nose and cheeks.

LUPUS FACT 10

Pregnancies in lupus are considered “high risk”, but advancing technology and a better understanding of the disease have improved pregnancy outcomes.

LUPUS FACT 11

Today, 80 percent of women with lupus symptoms that are not active can have successful pregnancies.

LUPUS FACT 12

Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain.

LUPUS FACT 13

People with lupus are encouraged to engage in appropriate daily exercise to maintain muscle and bone strength, but this must be paced with rest.

LUPUS FACT 14

People with lupus have two times the risk of developing cardiovascular disease than people without lupus.

LUPUS FACT 15

Nearly 3 in 4 people with lupus surveyed (76 %) said fatigue limits their ability to participate in social activities.

LUPUS FACT 16

Factors that may trigger a lupus flare include infections, ultraviolet light, stress, some medications, and some unknown environmental factors.

LUPUS FACT 17

Many symptoms of lupus imitate those of other illnesses, and can come and go over time, making diagnosis difficult.

LUPUS FACT 18

Based on a recent study, it takes an average of six years for people with lupus to be diagnosed from the time they first notice their symptoms.

LUPUS FACT 19

A majority of people with lupus surveyed (63 %) report being incorrectly diagnosed at a point. Of these, more than half of them (55 percent) report seeing four or more doctors for their symptoms before being accurately diagnosed.

LUPUS FACT 20

First degree relatives of people with lupus (parent, sibling or child) have six times higher risk of developing the disease.

LUPUS FACT 21

Sensitivity to ultraviolet light (present in both sunlight and artificial light) affects as many as 2/3 of individuals with lupus, and may cause fever, debilitating fatigue, joint pain, rashes and other symptoms.

LUPUS FACT 22

40% of adults with lupus and as many as 66% of all children with lupus will develop kidney complications.

LUPUS FACT 23

In one survey, more than half (55%) of people with lupus were working part-time, intermittently or are unemployed because of lupus.

LUPUS FACT 24

On average, the annual cost of lupus, including expenses related to treatment and loss of productivity, exceed $20,000, and can increase to $63,000 if the kidneys are involved.

LUPUS FACT 25

People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.

LUPUS FACT 26

About half of all people with lupus will experience a serious infection during the course of their disease.

LUPUS FACT 27

As many as 60% of people with lupus experience some type of memory problem, such as recalling names, dates and appointments or balancing a check-book.

LUPUS FACT 28

With current methods of therapy, 80 to 90% of people with no organ involved lupus can look forward to having the same lifespan as people without lupus.

LUPUS FACT 29

Early detection and treatment is the key to a better health outcome and can usually lessen the progression and severity of the disease.

Now you know. Tell someone.

Kindly drop by our car wash event at Auto Dash Teshie from 7am to 5pm on the 19th of May 2018 and help us raise funds to support people with financial challenges. There will be free health screening.

Let us be bearers of this Light of Hope for Lupus.

# LupusAwarenessInGhana # WearPurple4Lupus # tRiPurple4Lupus # PutOnPurple

Shining the Light on a National Monument for Lupus Awareness

Wed, 31 May 2017 05:40:13 GMT

It was a privilege to climax this May 2017 Lupus awareness month by lighting up the National Independence Monument purple. What better structure than the symbol of our freedom in Ghana?

Whenever people speak about purple, it is most likely about how it represents wealth, royalty and power. However, do you know, that purple is also the hardest colour for the eye to perceive?

This particular fact echoes with me the most, as it represents one of the major challenges that people living with lupus face. And that is why we lit the Monument purple, to put the spotlight on an invisible disease and to do whatever it takes for purple to stand out so that the eyes will not miss it. Lupus must not continue to go unnoticed. It should not be the silent killer that no one talks about. We must open the channels of communication with patients to figure out what their needs are, and provide them with information and resources.

Lupus, like many autoimmune conditions, is difficult to diagnose due to many factors including the similarity of its symptoms with many other conditions, but even more challenging is the surprisingly low levels of awareness that such a debilitating disease has, not only in Ghana but across the globe.

Lupus is an autoimmune disease that causes the immune system to attack the body's organs. In severe cases, organs damage and failure can occur. Lupus is a global health problem that affects people of all nationalities, races, ethnicities, genders and ages. At least 5 million people the world over are thought to have lupus.

Lupus mostly affects women of childbearing age, but men, children, and teenagers develop lupus, too. Most people with lupus usually will develop the disease between the ages of 15-44. Over 90 percent of people with lupus are women in their most productive ages. Lupus can affect any part of the body at any time, often with unpredictable and life changing results .

Historically, lupus caused people to die young, primarily from kidney failure.

Mortality is 67% higher for patients with systemic lupus erythematosus (SLE) than for adults without SLE

Living with lupus isn’t easy. Many patients report that the disease has a debilitating impact on their physical and emotional health, often leading to depression, stress and anxiety.

It is difficult for families to understand why a woman with lupus is unable to do the things she is expected to do. It can also be difficult for a young, unmarried woman to tell people about her lupus because it may affect her chances of getting married.

Due to its so called invisible nature, we find that many people tend to trivialize the pain of sufferers. “But you don’t look sick” or “it must be something spiritual” are the typical responses that many of our diagnosed patients have to contend with on a regular basis.

The reality is that lupus exists, its causes are largely unknown, it has no cure and is a very deadly chronic condition that demands a lot of attention despite what you may not see with your eyes.

SLE is notably more frequent in the people of African descent compared to Caucasians and they also tend to have more severe diseases, particularly renal involvement leading to end stage kidney disease.

Since the 1970’s due to new treatment modalities, 5 year survival rates of SLE improved from less than 50% to over 95 % currently in most developed countries. In Ghana , unfortunately up to 43% of our admitted patients died in a review 5 years ago. We want to change that discourse.

Founded in 2012, tRi Ghana is a non-profit organization dedicated to providing education, advocacy and research into the autoimmune rheumatic conditions in Ghana and Africa, with special focus on young and adolescent persons and their loved ones to improve outcomes.

We have also established a Patient Assistance Program which aims to provide emergency financial assistance to those with a life altering diagnosis of lupus or other autoimmune diseases and who have a high financial need and also to provide training as a long-term, empowering solution. Our emphasis is on connecting patients to social and community services, as well as educating and enabling individuals to become better advocates for themselves and their families.

Through our patient assistance program, we have provided free or discounted emergency medication to 53 patients. On average these can cost between 500 to 1000 cedis a patient and have also provided free or discounted lab tests to 20 patients.

Lupus can be managed with medication and lifestyle changes when diagnosed early. Early diagnosis can be only be achieved when more people are aware about it.

No health condition, especially one with such high mortality rate should be treated in any way as trivial. One of the topmost priorities of any nation should be the health of its people and therefore, every life that can be saved is worth saving.

In this modern era, where we are presented with a plethora of ways and methods where our voice can be heard, be it via social media or other means, we have no excuse to remain silent and leave such a weighty task for a few individuals or organisations.

Let us use our resources, be it our media spaces, our medical knowledge, technical know-how, policy influence, financial or whatever other resource we have available to help save lives. Is there more noble a cause for humanity? Let us not for one moment remain silent while people grapple in darkness with a condition they know little to nothing about.

The Rheumatology Initiative’s message is one of hope. As Archbishop Desmond Tutu once said, “Hope is being able to see that there is light despite all of the darkness”, a quote that I believe is apt for the setting we have here. As we lit up this monument, we wish to re-echo that sentiment, to all those diagnosed with the condition and their families, loved ones and caregivers, despite the pain and the darkness you might endure, look out for the light of hope and hold on to it.

To all persons affected by Lupus and other autoimmune conditions, no matter how tough the going gets, remember that this light is yours to hold on to as well, do not give up hope. And to all of us, let us be bearers of this light of hope and champions of this cause, let us together stand with the Rheumatology Initiative and as they say let us tRi together.

Lets eradicate the ignorance about lupus and we urge everyone to join us with whatever resource you can muster to see increased awareness, policy changes and ultimately a reduction in the high mortality rate associated with late and or misdiagnosis of this condition.

LUPUS AWARENESS MONTH 2017

Mon, 01 May 2017 22:07:54 GMT

Lupus Awareness Month is here!

Our awareness campaign theme this year 2017 is, “ TAME THE WOLF AND TAKE CONTROL ’

The word ‘lupus’ originated from the Latin word ‘wolf’. It’s attributed to a 19th century physician who used it to describe rashes or scarred irritations on the skin of his patients that looked like the bite of a wolf. The wolf is considered as a ferocious animal which ravages just like lupus does.

Lupus is life – threatening, unpredictable and can damage organs in the body. As part of lupus awareness month, we share some facts about lupus so you can be informed.

LUPUS FACT 1:

Lupus is an unpredictable, chronic autoimmune disease that ravages different parts of the body.

LUPUS FACT 2:

In lupus, something goes wrong with the immune system. Our immune system is designed to protect us from diseases and infections but when you have an autoimmune disease like lupus, the immune system instead of protecting, attacks healthy cells in your body by mistake leading to inflammation. Lupus can affect any part of your body.

LUPUS FACT 3:

Ninety percent of the people who develop lupus are women, though men can also develop lupus and their disease can affect some organs more severely.

LUPUS FACT 4:

Lupus commonly develops between ages 15 and 44. However, between 10 and 20 percent of cases develop during childhood and these tend to have serious health complications.

LUPUS FACT 5:

LUPUS FACT 6:

Lupus is not contagious and cannot be “given” to another person.

LUPUS FACT 7:

To diagnose lupus, doctors evaluate a patient’s current symptoms, lab test results, personal medical history and family medical history.

LUPUS FACT 8:

Lupus can affect any organ system of the body, including the heart, kidneys, lungs, blood, joints and skin.

LUPUS FACT 9:

The malar, or “butterfly” rash on the face is present in about one-third of people with lupus. This is a flat rash across the bridge of the nose and cheeks.

LUPUS FACT 10:

Pregnancies in lupus are considered “high risk”, but advancing technology and a better understanding of the disease have improved pregnancy outcomes.

LUPUS FACT 11:

Today, 80 percent of women with lupus symptoms that are not active can have successful pregnancies.

LUPUS FACT 12:

Lupus is not a form of arthritis, but many people with lupus do suffer from joint and/or muscle pain.

LUPUS FACT 13:

People with lupus are encouraged to engage in appropriate daily exercise to maintain muscle and bone strength, but this must be paced with rest.

LUPUS FACT 14:

People with lupus have two times the risk of developing cardiovascular disease than people without lupus.

LUPUS FACT 15:

Nearly 3 in 4 people with lupus surveyed (76 %) said fatigue limits their ability to participate in social activities.

LUPUS FACT 16:

Factors that may trigger a lupus flare include infections, ultraviolet light, stress, some medications, and some unknown environmental factors.

LUPUS FACT 17:

Many symptoms of lupus imitate those of other illnesses, and can come and go over time, making diagnosis difficult.

LUPUS FACT 18:

Based on a recent study, it takes an average of six years for people with lupus to be diagnosed from the time they first notice their symptoms.

LUPUS FACT 19:

LUPUS FACT 20:

First degree relatives of people with lupus (parent, sibling or child) have six times higher risk of developing the disease.

LUPUS FACT 21:

LUPUS FACT 22:

40% of adults with lupus and as many as 66% of all children with lupus will develop kidney complications.

LUPUS FACT 23:

In one survey, more than half (55%) of people with lupus were working part-time, intermittently or are unemployed because of lupus.

LUPUS FACT 24:

On average, the annual cost of lupus, including expenses related to treatment and loss of productivity, exceed $20,000, and can increase to $63,000 if the kidneys are involved.

LUPUS FACT 25:

People with lupus take on average nearly eight prescription medications to manage all of their medical conditions including lupus.

LUPUS FACT 26:

About half of all people with lupus will experience a serious infection during the course of their disease.

LUPUS FACT 27:

As many as 60% of people with lupus experience some type of memory problem, such as recalling names, dates and appointments or balancing a checkbook.

LUPUS FACT 28:

With current methods of therapy, 80 to 90% of people with no organ involved lupus can look forward to having the same lifespan as people without lupus.

LUPUS FACT 29:

Early detection and treatment is the key to a better health outcome and can usually lessen the progression and severity of the disease.

Living with lupus is like living with a wolf in the inside. Do we allow the wolf (lupus) to ravage our bodies or find ways of taming it?

Taming the wolf involves taking measures to ensure we keep lupus under control. Together we can make a difference by joining forces to educate lupus warriors and the public about Lupus

The Global Lupus Outstanding Warriors (GLOW) provides lupus support as a subgroup under The Rheumatology Initiative (tRi).

We invite you to support us in our Lupus Awareness-Raising Campaign!

Share our graphics , stories and other resources we provide daily during this month of May.
Donate 5 GHC or more via the MTN Mobile Money 0544089065 (Reference : GLOW)
Visit our website: www.trighana.com or social media handles to know how you can support and Volunteer

Someone you know has lupus, and raising awareness may save their life!

Let's TAME THE WOLF and TAKE CONTROL!