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

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.

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.

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.