Lupus Facts: what you should know

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.

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

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.

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.

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.

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.