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This month, in honour of Lupus Awareness Month, we had a chat with Misturah Owolabi, a Nigerian diagnosed with Lupus at 19. She shares her journey from when she started getting symptoms to diagnosis and daily management, highlighting the highs and lows of her experience.
Hello Misturah, please tell us a little about yourself and how you found out you had Lupus.
My name is Owolabi Misturah, and I manage Systemic Lupus Erythematosus (SLE), and fibromyalgia, which is a complication of the SLE, but it’s shortened to Lupus. I was diagnosed in May 2016, but my symptoms started manifesting in January of that same year.
I was always sick. Multiple times, My Mum, being a nurse, would treat me for malaria, typhoid and other illnesses but we only realized how serious this had become when one day in March, I woke up with a swollen face in the hostel. I rushed home and we immediately went to a General Hospital in Ogun State, where they suspected an allergic reaction since I had previously reacted to medications with sulfur compounds while treating various illnesses. This was also around when we had just moved into the school hostel for the new school year.
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After the initial treatment, the swelling in my face subsided but worsened the next morning. By evening, rashes appeared all over my body, starting as what looked like a heat rash but quickly peeling and causing a burning sensation. My face swelled so much that I couldn’t open my eyes, and the rashes spread, leading to severe joint pains that made sleep impossible.
Despite numerous tests, the hospital couldn’t diagnose my illness, so I continued taking medications at home, but my condition deteriorated. Sores appeared in my nostrils, throat, and mouth, making it hard to eat or swallow. Eventually, these sores spread to my head, emitting a foul smell when they popped. A butterfly-shaped rash, typical of lupus, covered my face, causing burning sensations. My skin became scaly and burned, forcing me to stop going to school.
I told some of my friends about it and one of them, whose mum is a senior nurse at LASUTH, helped facilitate my transfer there. I was admitted to the emergency ward and extensive tests were conducted. By this time, I was already urinating and coughing blood, with my face deformed and my eyes swollen shut.
The doctors initially suspected a kidney issue due to my symptoms, but it wasn’t until one day that I woke up in the hospital to find that a line of my cornrow had fallen off my scalp and my hair continued to fall out in clumps that prompted the doctors to invite a rheumatologist. Inviting the rheumatologist* led to the Lupus diagnosis.
*A rheumatologist is a medical professional who specializes in diagnosing, treating and managing diseases of the joints, muscles and bones.
Wow, what was it like when you got the diagnosis?
Diagnosing lupus is complex, as there isn’t a single test to confirm it. I had to undergo numerous tests, and the doctors had to piece together various symptoms to identify the condition. Lupus was entirely unfamiliar to me and my family. I recall the doctor asking if I had heard of it, and then mentioning that Selena Gomez has lupus as well.
At first, I was shocked and assumed it would be easily treatable. However, I soon learned it’s a chronic illness requiring lifelong medication and regular appointments, tests, and significant lifestyle changes. Although it was overwhelming, I was grateful for a relatively quick diagnosis. For most people, it takes years to go from experiencing symptoms to receiving a diagnosis. However, in my case, I had a significant swelling in March and was diagnosed by May.
How did this affect your daily life, what lifestyle changes did you have to make to accommodate Lupus?
Lupus affects everything you do, and this means that I had to build my life around this condition. It’s an auto-immune disorder that makes the immune system overly active, attacking healthy organs. As such, most of the medications are supposed to suppress our immune system, and this requires careful dietary choices.
I have to avoid foods and drinks that boost the immune system, like garlic. I also have to ensure that nothing I consume can interfere with the medications I take three times daily. Physically, I avoid strenuous activities, reduce social engagements, and prioritize rest since stress triggers lupus flares. Additionally, I minimize sun exposure as UV light can trigger lupus flares and make me feel sick. I also wear sunscreen and use non-UV lights at home.
My career choices are also influenced by my condition, ensuring potential employers understand that lupus can cause unpredictable health changes. I avoid late nights and large crowds to minimize infection risk due to my suppressed immune system.
These are the key changes I’ve made to manage living with lupus effectively. Lupus dictates every aspect of my life. For instance, I can’t stay out late without my medications. My lifestyle revolves around ensuring I can always take my medications on time and avoiding activities that prevent this.
I can imagine how financially intense this was, what was it like?
At the time of my diagnosis, I was still a student, so my parents were responsible for footing all the bills. When I started working, I knew I had to contribute to this too. I have been responsible for it myself for the last 5 years. Considering the costs of drugs and medications coupled with inflation, it has been a huge burden. Although I have to recognize my privileges because I can still work and earn money, some people with this condition are unable to work.
I belong to a few Lupus support groups, which are usually meant to provide a safe space for patients. However, there have been times when we’ve had to contribute to help cover the cost of medications or medical bills for a member.
Our doctors often recommend international standard labs, which are more expensive. Monthly, whether I’m feeling fine or not, I need to do tests like full blood count, urinalysis, urine microscopy, and ESR. These routine tests can cost around 48,000 Naira. For others being monitored for conditions like kidney health, the costs are even higher. For my regular check-ups, I spend a significant amount each month just on tests. I know people with lupus who need regular kidney scans, lung checks, and X-rays due to bone issues. These frequent tests can be very costly.
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This must be overwhelming; I’m so sorry. Being a part of these lupus groups means you are exposed to other Lupus patients, aside from finances and daily lifestyle, how did this condition affect relationships?
Fortunately, I did not personally experience losing friends. Even the person I married was someone I knew before my diagnosis, and he has been a huge part of my journey, but I know that it’s a big issue for a lot of lupus patients. Many people have had their partners walk away. Even some people who were already married got divorced. You know, their partners abandoned them, and all. But for me, that wasn’t the case.
Roughly how many people do you know currently live with Lupus?
So, in the last 8 years, I have met a lot of people living with Lupus in Nigeria. I met a couple in the hospital. Because of how Lupus manifests on the body, it is easy to recognize one another. I am also a part of a few Lupus support groups, and also very vocal about my condition on social media and that makes it very easy for anyone with lupus to also connect with me.
What’s your opinion on the Nigerian healthcare system’s ability to support people with this condition? Do you trust the doctors treating you, or do you often seek second opinions?
I’ve been treated by doctors from two general hospitals. The lupus community in Nigeria is managed by rheumatologists, but there are too few of them. My doctors at LASUTH and LUTH work under one rheumatology professor.
They are excellent, and we trust them deeply. However, the shortage of rheumatologists is a major problem. Patients often wait hours for appointments because only a few doctors serve nearly 50 lupus patients daily. Nationwide, there are fewer than 60 rheumatologists and we have increasing lupus diagnoses.
Despite these challenges, we appreciate the dedication of our doctors, who even support us through our groups. They have a relationship with us that goes beyond hospital visits; they are approachable and accessible, and you can call them anytime.
Another problem is the availability of medications. Lupus is not well-known, so many pharmacists don’t stock our medicines. Sometimes, we have to source medications and ship them from Abuja to Lagos.
The cost of treatment is another challenge. Even when people seek second opinions abroad, they often find that Nigerian doctors provide excellent care, but there are simply not enough of them.
During COVID, medication access was severely limited, causing many to fall ill because they couldn’t get their meds. Now, when medications are available, we must buy them in bulk due to uncertain supply. Additionally, many HMOs don’t cover our treatment, which adds to the burden.
What misconceptions do you think people have about this condition in Nigeria and have you ever felt stigmatized at all?
Initially, lupus presented various symptoms in different phases. When I was first diagnosed, my skin issues made it visibly apparent. At that time, many people, including family and friends, believed it was a spiritual attack rather than a medical issue, insisting on addressing it spiritually. Some suggested visiting clerics and pastors, misunderstanding lupus as a spiritual issue. In Yoruba culture, they called it “EDI,” meaning self-inflicted harm.
Another thing is that the side effects of my medications made me retain water and look chubby, making it seem like I was healthy. During this phase, people doubted I was ill, despite the heavy medications I was on. When I return from the hospital looking well, people often doubt I’m sick because lupus isn’t visible on my face. This disbelief extends to various aspects of my life, like in school, where lecturers wouldn’t accept my illness as a reason for missing tests. The lack of awareness about lupus means people only recognize more common conditions like sickle cells.
During my NYSC, I faced similar skepticism despite having a doctor’s note for exemption, the officials doubted my illness. The NDLEA officials suspected me of being an addict due to my painkillers for lupus-related fibromyalgia. Even the camp doctors were unfamiliar with lupus, with one insisting it only affects Latino women. This led to conflicts and NYSC blacklisting me temporarily for involving my doctors, claiming they only recognized diseases like asthma, sickle cell, cancer, and HIV, dismissing lupus as unfamiliar.
This lack of awareness also extends to job interviews, where employers often think I’m making excuses when I mention lupus. There’s also significant stigma in relationships, with misconceptions that lupus is sexually transmitted or that women with lupus can’t have healthy children. Some people even believe they can contract lupus by dating, marrying, or having sex with someone who has it. These misconceptions are false. Lupus is not sexually transmitted, nor is it a spiritual attack; it is a medical condition that can be well-managed. Many people with lupus have learned to appear fine because society moves too fast to accommodate their needs. This strength is often mistaken for faking or lying about their condition.
We can only imagine what it feels like. What are some other thoughts on lupus you want people to be aware of?
Lupus predominantly affects women, with a ratio of 13 women to every man. While it used to mainly affect elderly women, now even children can have it. If someone experiences multiple unusual symptoms, it’s important they see a rheumatologist. Also, it’s crucial for lupus patients to avoid mixing herbal medicines with their prescribed medications, as many herbal remedies boost the immune system, which is harmful to lupus patients. This can endanger their health and has even resulted in fatalities.
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