A Twist of Fate: My Complex Autoimmune Story
tRi Ghana • March 11, 2025
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.
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.
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.
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.
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.
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.
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.