LUPUS AWARENESS MONTH 2017

Raising awareness and compassion for people living with rheumatic conditions in Ghana this Christmas season.

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.

tRi Ghana introduces Rheuma Connect, Ghana’s first digital platform for managing rheumatic and autoimmune diseases. Download the app and take charge of your health.

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.