When The Body Revolts

Solomon Elusoji tells the story of an autoimmune disease, Systemic Lupus Erythematosus, considered rare in the country, but happens to be a quiet force of evil, turning friends to enemies

In 2008, Edosio Oghale was gripped by fever. At the hospital, doctors diagnosed her with malaria and promptly placed her on medication to that effect. But, weeks flitted by and the fever persisted, kept recurring, looming over her like an interminable loop. Later, the doctors added typhoid to her diagnosis, but she did not get better. One doctor told her she was probably suffering from a fungal infection and gave her a different set of drugs. But, all of a sudden, she developed rashes all over her body, from head to toe, with particular concentration on her joints.

“It was horrible, ”Oghale said, eight years after this terrible ordeal. “I was in my room all through. My parents were scared, I was scared. We called people, some said it was spiritual, some said it was HIV, some said it was all sorts. I was just on my bed all through; if I tried to stand or move, there would be a tear, my joints were really aching and my fingers were swollen like sausages; I couldn’t do anything but talk.”

The major point of pain was that no one had an accurate diagnosis of what was wrong, not even the doctors. She spent a great number of time and resources traversing different hospitals and specialists, but none could provide a specific answer. “When the doctors see me, the first thing they say is ‘go and do HIV test, this is HIV. It was so embarrassing.”

After about a year of groping in the dark for answers, she met a doctor who said she thought her ailment was caused by an autoimmune disease. “I can’t even remember the name of the doctor or which hospital he was with, because I had gone to many,” Oghale said.

She was given a referral letter to the Lagos University Teaching Hospital (LUTH), to see a dermatologist, since all the symptoms were manifested on her skin. “When people saw me, accompanied by my dad, people were just shifting away. I didn’t have any hair and my body was all soiled.”

She met Dr. Ayesha Akinkungbe, a consultant dermatologist, who also lectures at the University of Lagos’ College of Medicine. Promptly, Akinkungbe confirmed it was an autoimmune disease, Systemic Lupus Erythematosus, to be precise. To be sure, Oghale was asked to run a series of tests. “The only place I could run those tests was in PathCare Laboratories. And they even had to send my samples to South Africa. I had to wait for seven days.”

When the tests came, Akinkungbe’s observation was confirmed and Oghale was put on treatment for Lupus. “I had to come for check-up every week, because they didn’t want the drugs to affect my organs and check for side-effects. Sometimes they had to change the drugs. I was getting better, but it was a slow process.”

Today, Oghale is back on her feet. The spots on her skin, while still visible to the keen eyes, have largely disappeared. She wears a confident aura and her smile glows. But she’s still on medication and her regular checkups have not ended. She told this reporter her story in a roomy space inside a LUTH annex at Yaba, Lagos.

Understanding systemic Lupus Erythematosus
Systemic Lupus Erythematosus (SLE), Lupus for short, is an autoimmune disease where the immune system, which is normally expected to fight off dangerous infections and bacteria to keep the body healthy, goes rogue and does the opposite. The term Lupus has been used to identify a number of immune diseases that have similar clinical presentations and laboratory features, but SLE is the most common type of Lupus.

Lupus affects women more than men. It manifests more too in women who have started seeing their menstrual periods and are in that fertility phase between childhood and menopause. In fact, patients may experience more severe symptoms during pregnancy and while observing their menstrual period, an observation which has led some medical professionals to believe that the female hormone, oestrogen, may play a role in triggering the disease. However, more research is needed to prove this theory.

Some people are born with a tendency toward developing Lupus, which may be triggered by infections, certain drugs or even sunlight. While there’s no cure for Lupus, treatments can help control symptoms.

The biggest challenge in dealing with Lupus, especially in Nigeria, is diagnosing the disease. Because its symptoms come in innocent variants like fever, skin rashes, severe headache, joint pains, most patients, like Oghale, spend a long time ‘mis-treating’ themselves. When symptoms escalate (at this stage, sometimes, a butterfly-shaped rash appears on the cheeks and nose-bridge) and wrong diagnosis leads to ineffective treatments, most people conclude it is a spiritual problem.

One sunny Wednesday in May, this reporter attended a Lupus awareness event held at the Diabetes Clinic inside the Lagos State University Teaching Hospital (LASUTH), Ikeja. The event, which was organised by the Nigerian Arthritis Foundation and the Nigerian Society of Rheumatologists, featured several Lupus patients who shared stories of their ordeal and struggle. Virtually all of the stories involved initial struggles with diagnosis. For one woman, before she knew she was suffering from Lupus, she had lost her fingers.

The dynamism of the disease is astonishing. It has no boundaries or limitations. It can affect the kidney, the liver, the heart, the eyes and any part of the body it deems worthy of destruction, including inducing psychosis.

One of the doctors present at the LASUTH awareness event was Dr. Femi Adelowo, a professor of medicine and consultant rheumatologist at LASUTH, who has been largely responsible for the treatment of Lupus patients in the country. “The commonest presentations among Nigerian patients are recurrent fever, which is mistakenly managed as malaria, fever or typhoid over and over again without a sustained improvement,” he told one of the national dailies in a recent interview. “Our patients also present with joint pains and extreme fatigue. Many of them are short of blood- anaemia, and are often transfused with blood over and over again without a sustained improvement. They also present with mouth sores, sore throat, chest pain and cough. Skin rashes are common, as well as significant loss of hair, especially while combing.

“A few patients will present with seizures and sometimes, psychotic behaviour and depression. Kidney involvement is particularly common among our patients and may predate other manifestation of lupus. Recurrent pregnancy losses are common, as this ‘body at war’ battle is even waged in the womb.”

Fighting Lupus
Growing up, for Oghale, was comfortable. She is the fourth of five children. “We had no issues at all,” she said. She went to Central Bank Primary School, the Nigerian Navy Secondary School, studied English and Literature at the University of Benin and observed her National Youth Service in Lagos, before Lupus showed up. Her dream was to become a human resource professional. “I like being in the background, making things happen,” she said.

She started falling ill during her service year, a phenomenon, which, according to her, was odd. “We are mostly healthy at home, except for the occasional malaria thing that doesn’t last so long. And that was why my case was strange at first.”

Through the initial stage of her recurrent bouts of malaria, she started working at her father’s firm. But, gradually, as the illness worsened, she started to skip work. “I think what this illness does to you is that it slows you down,” she said.

Oghale counts herself, not lucky, but “favoured”. Unlike other chronic victims of Lupus who shared their stories at the LASUTH event, she was able to diagnose the disease before it affected any of her major organs; although, it continues to be a daily struggle. “Sometimes, if I tend to be naughty and don’t take my drugs, I’ll wake up in the morning and my hands are swollen like sausages and my eyes are bloodshot.”

“Taking your drugs regularly”, according to Adelowo, is key for Lupus patients who want to live a normal life. “Drugs that have been used are called immunosuppressive to suppress the ‘rogue’ ‘area boy ‘coup plotter cells’,” she said in an interview.

“They include steroids, hydroxychloroquine, azathioprine, mycophenolatemofetil, tacrolimus, cyclophosphamide, and cyclosporin. Many of these drugs are also used in the management of cancer. But then, drugs can have multiple functions, for instance, aspirin. Of recent, a new group of drugs called biologics have been developed. These are rituximab, belimumab, and abatacept. Other modalities of treatment are intravenous immunoglobulin and plasma phareses.

“Lupus patients must also use sunscreen, as excessive sunlight predisposes to attacks. They should avoid stress physically and emotionally. They should eat well and rest. Overall, we have in our custody very effective medications and we can switch from one to another, as the case may be.”

The main challenge, however, continues to be awareness of the disease. The number of wrong diagnosis observed in most Lupus patients’ stories shows that even most medical professionals no or little knowledge of the disease. It is an alarming situation.