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Oseme Etomi: Let’s tRi Together! Building an International Community to Fight Lupus & Other Auto-immune Diseases

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I couldn’t help but be moved by the brave story of Toluwanimi when it was shared on BellaNaija. Toluwanimi is a young woman who was diagnosed with Lupus after a long and painful journey. She had suffered many symptoms that are common to most people during their life. The sort of symptoms that most people associate with an infection: fevers, body aches, tiredness and rashes. But time after time she saw doctors who treated her over and over again for malaria, and she never go better. Unlike symptoms caused by infections which get better with treatment, Toluwanimi’s symptoms would not leave her. She got sicker and sicker. Despite her suffering for months and years, she was lucky to meet a specialist dermatology doctor who finally told her she had SLE (Systemic Lupus Erythematosus). Many young women like Toluwanimi never meet that fateful doctor and remain undiagnosed.

What is SLE?
SLE (or Lupus) is an autoimmune condition (one where the body attacks itself). For reasons unknown, it is more likely to affect black women of childbearing age. In America, it affects 20-150 cases per 100,000. In African-Americans, these rates are as high as 406 per 100,000. It is more common in women compared with men (9-1) and during reproductive years (teens-early 40s). In Nigeria, the average time to diagnosis is 4 years (Nigeria). This delay can cause irreparable damage and even death.

What is clear to me is that Toluwanimi’s story is not unique. How many young people do we hear of in Nigeria that “just die”? Hundreds, if not thousands, are treated for malaria or typhoid and do not respond. I suspect the answer is too many; but the truth is: we just don’t know. It’s painful when young people die, so we get angry, we cry, we mourn, we pray, we move on. No more questions are asked.

As a society, we accept these deaths as the will of God. So, many more go unnoticed and undiagnosed.  We do not yet have a medical system that is accountable for unexplained deaths. Deaths are not reviewed independently to look for recurring or preventable themes. How many of these patients had SLE or other autoimmune diseases?

Delays in diagnosis of Lupus are ‘multifactorial’, caused by many different things:

Lupus is a complex disease. It is often not entertained by physicians
Amongst physicians, SLE is known as the great mimic of disease. It can affect any organ in the body and often produces vague subtle symptoms. In September, Selena Gomez announced her recent renal transplant following severe lupus damaged her kidney. When patients consult with doctors complaining of symptoms that cannot be explained by common conditions which can be tested for, then a diagnosis of SLE should be always be considered. The difficulty with diagnosing Lupus is that if you do not think about it, it can’t be diagnosed. We need to raise the awareness of SLE amongst all doctors, to consider the diagnosis in any patient who has multiple or persistent symptoms that are not improving with conventional treatments.

Lack of awareness in public understanding
Whilst Toluwanimi’s case is not unique, she in herself is an exceptional person. Why? Because she chose to speak out. In Africa, we do not talk about ill health. Because of superstition or taboo, for fear of being singled out and stigmatised. She bravely shared her story and has set up the first Lupus charity in Nigeria: The Lupus Refuge (TLR) Nigeria. Through the charity, she hopes to give other sufferers with Lupus and other rheumatic diseases a voice. In numbers, we find strength.

Lack of specialist’s attention in Africa at large
For many decades, diseases like SLE were thought to be rare in Africa. Much of this has to do with the focus being on communicable or infectious diseases (e.g. malaria, typhoid, HIV). As we start to focus on the increasing burden of non-communicable diseases, many more patients are being diagnosed. The WHO recommend that there should be 1 rheumatologist per 100,000 patients. Rheumatology doctors specialise in bone and joint disorders mostly, many of which are caused by autoimmune diseases like Lupus. There are 13 qualified Rheumatologists in Nigeria, serving a population of 180 million, that’s 1 rheumatologist for 13 million people. We have a long way to go in addressing this unmet need. The way forward needs to focus on patient, non-specialist and specialist engagement.

Dr Douglas Fink, Dr Djifa Dey and Dr Oseme Etomi at the MSK plenary session November 17

I am a UK based Rheumatologist and in 2016, a colleague (Dr Doug Fink) and I set up a project at the Nigerian Institute of Medical research looking into how common musculoskeletal disease is in Lagos. We ran an educational event focusing on these diseases across West Africa. Amongst invited guests and speakers were Toluwanimi and Dr Dzifa Dey.

Dr Dey is one of two rheumatologists in Ghana. To address the need in Ghana, Dr Dzifa Dey pioneered a community-centred approach to improving rheumatology care. She founded tRi Ghana (The Rheumatology Initiative) as a non-profit organisation to provide advocacy, education and research for autoimmune rheumatic conditions in Ghana. tRi Ghana organise educational seminars for non-specialist physicians, support group meetings for patients and fundraising events that help provide emergency treatment for patients and lobby for government support.

Members of the tRi International collaboration. Toluwamini Fijabi

Together with the help of Tolumanimi of TLR Nigeria and Dr Dey of tRi Ghana and we have founded the tRi International initiative. An international movement of sister charities which we hope will bring together patients, non-specialists, specialists as well as the public at large. Our goal is to share knowledge and information and to strengthen the plight of many more patients like Toluwanimi.

​​​Oseme qualified as a medical doctor 10years ago and currently works in London-England as a rheumatology and internal medicine registrar with a sub-specialist interest in maternal medicine. She is passionate about all things Nigerian especially raising awareness and improving standards of healthcare in Nigeria and other low-middle income African countries.

4 Comments

  1. Miss

    December 29, 2017 at 3:21 pm

    Hmm Lupus. Horrible disease. I was diagnosed in 2003 shortly after I graduated from secondary school. I was looking forward to a lifetime of enjoyment after having been in such a restricted environment but then I got the diagnosis. I am blessed to have a mum who due to experiencing similar conditions the year before had an idea of what I was going through so from the word go I was never misdiagnosed. It started off as SLE but so far my kidney function is excellent despite the not so good food I ingest on occasion. I research, TRY to eat well and take a lot of alternative concoctions and on the kidney front I am so grateful to God. Right now I am struggling with the skin version, I have heard so many names- Discoid Lupus, Chillblain Lupus, Raynauds, Vasculitis Lupus etc all I know is that my skin is sadly scarred. I believe there is a cure out there in the form of a supplement I am lacking, food I am eating that I shouldn’t. or a chemical that I have been exposed to. Right now, I have no clue but I haven’t lost hope and I am as normal as you can get…looks and energy wise.

    I am one of those who for now would prefer to remain anon although I silently support the cause. We are such a small community. I also know a number of people, some known and vocal and others like me under the radar, who have and are suffering from lupus. Thank you for this article Dr. Etomi. There is so much to say, all the side disease and conditions that come along with lupus. To anyone going through it please be strong, hopefully and prayerful. Also know what works for your body INTIMATELY! I cannot stress that enough!

    • Adedee

      December 30, 2017 at 1:29 pm

      I also have horrible and stubborn scars on my arm and face. I got diagnosed this September and I can say it’s not been very easy

  2. Anon

    December 29, 2017 at 6:04 pm

    Dr Etomi
    This is great work by you and the other doctors!
    We need more awareness about these conditions.
    Great job!

  3. Shakita Jones

    June 16, 2018 at 12:36 am

    Hi… how do I get in touch with Toluwanimi and Dr. Etomi.

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