Systemic lupus erythematosus (SLE), or simply lupus, is a complicated and unpredictable autoimmune disease, with no known cause or cure. The body attacks itself, potentially causing irreversible damage to organs or tissue. Common symptoms include fever, joint pain, skin rashes, mouth ulcers and fatigue – symptoms that are shared by many other illnesses, making lupus very hard to diagnose. In the developed world, where lupus can be caught and treated early, the disease is usually not life threatening. In the developing world, however, mortality rates are high.
Of the 1.5 million Americans with lupus, 90 percent are women. It’s not yet clear why Lupus, like all autoimmune diseases, affects women more than men, but some experts theorize it may be due to the fact that women tend to have stronger immune systems, which puts them at greater risk, or due to female sex hormones and the fluctuations that come with menstrual cycles, puberty or pregnancy.
The majority of lupus sufferers are also ethnic minorities, with the S.L.E. Lupus Foundation estimating that 1 in 250 African-American women are affected by the disease. And yet, for a long time, lupus appeared to have a negligible prevalence on the African continent. Now health experts are discovering that Africa’s seeming immunity to lupus was only due to a mix of lack of awareness, inadequate medical resources and culturally ingrained fear of disease.
In an attempt to explain why prevalence of lupus was so low in Africa, some academics had suggested the wide use of antimalarials was keeping the disease at bay. Antimalarials are used to help with some symptoms of lupus, so the thinking was that preventative administration of these drugs was stopping the disease’s progression.
“That’s not true,” says Dr. Olufemi Adelowo, a professor at Lagos State University College of Medicine. “[Researchers] came to Africa, spent one or two weeks, and did not really sit down with those who were there. The theories are not in keeping with what’s on the ground.”
Doctors working in rheumatology and nephrology (which deals with the kidneys) in Africa now assert that autoimmune diseases, and lupus in particular, are not in fact so rare. Adelowo says he sees around 40 lupus patients a week, and at least three or four of these are new diagnoses. Until recently he ran the only rheumatology clinic (the type of facility that usually deals with lupus patients) in the whole of Nigeria. There are now 12.
With no systematic collection of data on lupus sufferers around Africa, solid statistics are hard to come by. But anecdotal evidence suggests the number of women and men being diagnosed with lupus is rising. The reason for this increase in Nigeria is not necessarily that more people are contracting the disease, says Adelowo, but simply that more people in the medical community are recognizing the symptoms. “There is an increased awareness of lupus among many doctors, and they have therefore been sensitized to pick up lupus cases early and refer early,” he says.
Even so, lupus is still incredibly hard to diagnose, especially in places like Nigeria. One of the main problems, says Adelowo, is that the first symptom doctors often see in patients is a fever, so the assumption is that they have malaria. “Fever is the most common presentation [of lupus], and malaria fever is common, so many of the patients end up being treated over and over and over for malaria,” he says.
Another key problem is that patients do not come forward when they feel they may be ill. “Most of my patients do not report early because of what we would call a spiritual attack,” says Adelowo. “They do not think that [their symptoms] are caused by pathogenesis. They think someone is attacking them with some illness” and so don’t seek medical help.
And those who know they have lupus often stay away from doctors for fear of the stigma that comes with the disease, which many mistake for HIV. Frank Gordon, who set up the Lupus Samaritan Group in Cape Town with his wife Patricia, says that many people he meets try to hide their illness.
Gordon’s daughter Olivia was diagnosed with lupus when she was 13 and died in 1998, aged just 18. At that time, he says, the doctors in South Africa were unfamiliar with lupus, so for a long time, nobody knew what was wrong with her.
While the medical process of recognizing and treating lupus has improved, there is still very little support for lupus patients, says Gordon. The Lupus Samaritan Group is the only community group for the disease in Cape Town, and one of only a handful in South Africa. Gordon and his wife go out into the community to talk to people who are newly diagnosed, and try to help where they can, both emotionally and financially. They also run meetings three or four times a year to try and spread the word about lupus.
“The biggest thing that needs to happen is understanding in the workplace, and the same applies in schools,” says Gordon. “Teachers say, ‘You are lazy. You don’t want to listen. Why do you fall asleep?’” Fatigue is one of the most common symptoms of the disease.
But even with greater awareness, there are still barriers to effective diagnosis in Africa. Dr. Ikechi Okpechi from the University of Cape Town points to a lack of resources, such as vital antibody tests. In places like Cameroon, Nigeria and Ghana, the tests are not available unless the patient already has full-blown symptoms of lupus, by which time they may already be seriously ill.
In order to improve understanding, and coordinate policy and therefore funding for treatment, health experts agree there needs to be greater collaboration between stakeholders. Here, Okpechi is making some inroads, helping to run the African Lupus Genetics Network (ALUGEN) of clinicians and researchers. Established in 2015, the group hopes to improve outcomes for SLE patients in Africa through greater understanding and collaboration.
“Currently we are collecting data on quality of life in lupus patients,” says Okpechi, and the ALUGEN registry will be a resource that he can then rely on for clinical trials and further studies. But as Adelowo says, it is increased awareness of the disease among doctors and the general public that will really help those who are suffering.