LUPUS AWARENESS MONTH 2017
Dr. Dzifa Dey • May 1, 2017
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:
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 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!
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.
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
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
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.
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
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.
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.
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.
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.
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.