Stanley Ukpai, a medical doctor and public health expert said, “My aunt died of lupus last year. She had always complained of body weakness and joint pains. She was being treated for arthritis. It took three years to diagnose her.”
His experience with his aunt is consistent with the experience of many Africans whose autoimmune diseases go undiagnosed for years, and healthcare professionals like Mr Ukpai are just as perplexed by this issue.
It was believed in the past that Africans did not suffer from autoimmune diseases. However, research now shows us that autoimmune diseases such as systemic lupus erythematosus (SLE) or more commonly known as lupus are becoming more prevalent in African societies than hitherto perceived.
Are Africans genetically less susceptible?
It is well-established within researches that the environment of a person can highly influence one’s susceptibility to develop infections and, indeed, autoimmune diseases. This notion is premised on an innate genetic difference between the immune system of people of European and African ancestry.
This is to say that the immune system of someone with African lineage is configured to cope with the distinct health challenges that their ancestors faced. For this reason, it is suggested that African ancestry exhibit a stronger immune response in comparison to their European counterparts.
In addition to this, the absence of research into autoimmune diseases, specifically Lupus, in Nigeria is indicative of this being an unexplored problem and further the perception that Nigerians need not concern themselves with it. However, this is far from the truth.
The incidence of Lupus, as found by a six-year study, tells us that 5.28 per cent of the 1,250 rheumatology cases that came to a clinic in Lagos State were Nigerians with Lupus. In this regard, the belief that Africa is exempted is, in fact, just a lack of recognition, stemming from misconceptions and a lack of research that has been awarded to such a serious health condition.
These fuel the problem of misdiagnosis. Although few have explored the delay in diagnosis of Lupus, two studies which explored the average diagnosis period of particular autoimmune diseases in Nigeria noted that the average period before diagnosis was three months to five years in one and two to seven years in the other.
What is an autoimmune disease?
The immune system itself is a complex network of cells and molecules that are constantly working to protect the body from germs and other foreign invaders in the environment. Whereas an autoimmune disease describes a condition in which the body’s immune system, that ideally is meant to protect the body, acts in a self-destructive manner by mistakenly attacking the body.
This misdirected response occurs as a result of the immune systems naturally produced proteins known as antibodies. Antibodies play an important role in protecting the body. However in a person with an autoimmune disease, the antibodies instead of fighting infections, attack and damages the body’s own healthy cells and tissues.
Almost any part of the body can be targeted by the immune system as autoimmune disease can be systemic or can affect specific organs and tissues, including the heart, brain, nerves, muscles, skin, eyes, mouth, lungs, digestive tract and blood vessels or body systems including the endocrine, gastrointestinal and liver, rheumatological, and neurological systems.
The systemic nature also means that the individual’s entire body can be affected and not always one specific organ or tissue. Although, depending on the part of the body affected, autoimmune diseases are treated by various healthcare professionals. This makes it even more challenging to diagnose them. Where a rheumatologist will treat a patient with lupus, an endocrinologist will treat someone with type 1 diabetes.
The symptoms of autoimmune disease are also notably vague and often mistaken for several other health issues, making it even more difficult to diagnose.
However, in the earlier stages, many people are reported to present with a similar line of signs and symptoms such as fatigue, aching muscles, swelling and redness, low-grade fever, skin rashes or dryness, trouble concentrating, numbness and tingling in the hands and feet or hair loss.
The similarity in the symptoms of most autoimmune diseases means that patients often go through various routes of care until their autoimmune disease is discovered by the appropriate healthcare professional in their respective fields of medicine.
Several autoimmune diseases vary based on the part of the body that is being targeted by the immune system. Examples of some common autoimmune diseases include:
Type 1 diabetes,
Systemic Lupus erythematosus,
Multiple Sclerosis (MS),
Inflammatory bowel disease (IBD),
Alopecia and Sjogren’s syndrome.
Aside from these, 10 researchers have identified a total of about 80 – 100 different types of autoimmune conditions which encompass a broad category of related diseases. Further, the American Autoimmune Related Disease Association (AARDA) suggests that at least 40 more diseases are suspected of having an autoimmune basis.
Identifying and diagnosing autoimmune diseases
Mr Ukpai said:
“Because these [autoimmune diseases] can occur almost to any part of the body, there is no one test that can diagnose autoimmune diseases but varied tests may help you pinpoint which autoimmune disease you may be dealing with.
However, the first step is to do an antinuclear antibody test (ANA), a positive test may usually indicate the presence of an autoimmune disease but can be positive when autoimmune disorders are absent. Hence this test is supported with other confirmatory tests in concurrence with the presenting symptoms. Tests may include anti-dsDNA, anti-RNP, anti-Sjogren, ant-scleroderma, Rheumatoid factor”
To make a diagnosis of autoimmune disease may be relative with regards to the time it takes to make the diagnosis. Whilst it may be easy to diagnose type 1 diabetes by conducting sugar tests and glucose tolerance tests, it may not be that easy to make a diagnosis of Lupus (SLE).
With most of these autoimmune diseases, they mimic symptoms that are seemingly prodromal at first, then worsen as time goes by. Hence in non-specialised centres, the diagnosis may never be made” He said, reaffirming the issue of diagnosis.
One may have two autoimmune diseases hence presenting further challenges with diagnosis. Even in the developed countries it may take about a year or more to make the diagnosis of Lupus on the average after bouncing from GP to a specialist. That is if you have health insurance. The issue is that the early symptoms mirror other conditions presenting the challenge.”
For example with an autoimmune disease like lupus, SLE symptoms come on with joint pains, weakness, chest pains, fever, weight loss, skin rash, swollen nodes and ulcers. Mr Ukpai explained that, as a physician, the symptoms an autoimmune disease like Lupus would leave healthcare professionals with an array of disease to consider. He added:
“This would make me consider HIV, arthritis etc. My mind doesn’t go to Lupus because I think it’s uncommon in these climes. You get my point? I may now go ahead to spend time treating symptomatically. The patient may get some relief and go home only to come back. But this time maybe to another doctor.
This revolving door treatment may take on average about four years before someone thinks about running antibody tests on the patient or even recommending a specialist. In that time patients may have exhausted their resources, prolonging the time for diagnosis. The centre may not even be equipped to make the laboratory diagnosis.”
These issues point to the frightening reality in Nigeria of unavailable techniques, testing and sub-par knowledge of diagnosing autoimmune diseases like Lupus.