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For 23 years, I suffered from immune system disorder nobody understood

By Chioma Obinna

Lupus is a systemic autoimmune disease that occurs when your body’s immune system attacks your own tissues and organs. Inflammation caused by lupus can affect many different body systems — including your joints, skin, kidneys, blood cells, brain, heart and lungs. In Nigeria, awareness for such a life-altering disease remains poor.   For so many people, it is a case of witchcraft.  

Today, half of lupus patients are ignorant of their condition while some who know about it have no access to treatment due to acute shortage of rheumatologists and difficulties in diagnosis. According to experts, the condition, which can present in different forms, including constant malaria, typhoid, rashes on the face and body, weakness, anaemia, convulsion, mouth and throat sore, chest pain, headache and loss of concentration, occurs more in women than men. Statistics show that 90 per cent of people with lupus are women and the majority is diagnosed between the ages of 15 and 44. Penultimate week, as Nigeria joined other nations to mark World Lupus Day, Sunday Vanguard spoke to a lupus survivor. To her, living with the ailment comes with a lot of challenges and can be best described as one day, one trouble.

Nightmare

“I cannot wish lupus to afflict my worst enemy”, Mrs. Chisa Nosamiefam, the survivor told Sunday Vanguard without ambiguity.   The reason for the honest and polite confession by Chisa may not be far-fetched. This is because of the fact that lupus remains a difficult condition that experts are yet to prove why it occurs or why it affects every organ of the body and why each day presents a different challenge in the life of victims.

Living with lupus for 23 years after the correct diagnosis was made overseas has not been easy. According to her, the battle for survival is not as easy as it has been from one challenge to the other.

Chisa recounted that the problem started with joint pains, fever and inflammation in the chest.

Amid the pains, her appearance did not show she was sick. Unless you live with her or you are close to her, you will never believe she was ill.

“One aspect of a life with lupus is that nobody can fathom that you are sick because we don’t look sick despite the many challenges”, she said.

“Every day, you suffer pain and there is a limit to what you can do physically, and emotionally. There are a lot of things you cannot do living with lupus.   It is one problem after the other.

“It affects marriages because some spouses can’t cope.   This is because lupus affects any part of the body”.

Determined to survive

Just like every other mother that has her children at heart, Chisa kept faith alive.

“I fought very hard because of my children. Who will I leave them for?, sometimes I ask myself.

“I was determined to survive at least for my children. Then, I had young children and my thinking then was who will I leave my children for?”

Lucky Chisa, while experts in Nigeria say it takes several years for the disease to be diagnosed due to the complex nature of the disease, her case is different as she was diagnosed with lupus about six years after the problem started.

The survivor, who is now the Co-Founder of Labalaba Foundation, an organisation set up to raise awareness about the disease in Nigeria, said she was diagnosed abroad.

“In my case, I was not here. I was overseas. But even overseas it takes an average of six years before it is diagnosed and because it is a complicated disease it mimics everything”, she said.

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“Over there, they were trying different things in the past but now the diagnosis is getting better. It took a while before I got the right combination of doctors because one doctor cannot treat lupus. It requires a combination of specialist doctors working as a team to treat you.”

Lamenting that Lupus was very expensive for many families to manage; she said: “I did not go through the period of denial. I was just fighting to conquer.”

Still narrating her heart-rending story, she said: “Lupus is a kind of thing that families don’t seem to understand fully. Even you as a patient, at the beginning, you don’t understand what is going on.

“Sometimes you wonder if it is extreme fatigue or tiredness. Sometimes, you will have rashes all over your body. Today it may be your heart and tomorrow it will be your legs.   People get confused about it.   Your family members want to understand but they don’t seem to get it. It is very complicated”.

Hope 

Continuing, Chisa, who disclosed that she established her foundation last year to give hope to Nigerians living with lupus, said she does not want others to go through what she went through in search of help.

“It started as a support group with about 15 women. Today we have over 60 people in the group. What we do is to encourage victims and educate them about the disease.

“We also offer free counselling to women because their marriages are breaking down due to lupus and they are having challenges with childbirths, they are having challenges financially.

“Their extended families do not understand. “We live in a culture of silence where you don’t talk about your disease, we live in a culture of suspicion, and somebody somewhere is the cause. So, it is a combination of so many things. Our challenge is to make these people live better.

“I am speaking to you today because I have chosen to be the voice.   I am here today by the grace of God. I can give back and be the voice.

“If you have any of symptoms like constant fever that you do not understand and it is not malaria, if you are having miscarriages, if you are having rashes all over your body, if you are having depression and if you are having aches and pains, go and see a rheumatologist. “There are very good ones at the Lagos University Teaching Hospital, LUTH, and Lagos State University Teaching Hospital, LASUTH. Check it out.”

Further, she said: “If I have gone through all these, I don’t wish it for my worst enemy. Through the foundation, I want to find out if there are other Nigerians that are going through this and see what I can do to help”.

Not a death sentence 

Chisa maintained that the disease was not a death sentence if the right management is applied. “You can live well with lupus. You can overcome the challenges of lupus,” she stated.

According to a Consultant Dermatologist and Genito-Urinary Physician at LUTH and Co-Founder of Labalaba Foundation, Dr. Ayesha Akinkugbe, lupus knows no boundaries.

“It affects anyone on any organ anywhere in the world”, Akinkugbe said

The expert described lupus as a chronic, a complex autoimmune disease that affects millions worldwide.

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“In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body’s own tissues and organs like the kidneys, brain, heart, lungs, blood, skin, and joints.”

The global prevalence of lupus, also known as Systemic Lupus Erythematosus (SLE), lies between 0.02 per cent and 0.15 per cent. The incidence and prevalence is two to three times more in Africans and Asians than in Caucasians.

The epidemiology of lupus in Nigeria and Africa is largely undetermined. Recent studies suggest that significant numbers of Nigerian patients were presenting with SLE. University of Ibadan reports show there are about 100,000 cases in Nigeria a year.

In a rheumatology clinic in Lagos, it was found that lupus accounted for 5.28 per cent of all the 1,250 rheumatology cases seen over the study period of six years.

Also, a recent study found that lupus has become one of the top causes of death of females between 15 and 24 years old.

Experts say this can be attributed to lack of societal awareness; therefore, the awareness effort in Nigeria must become more aggressive.

According to a professor of medicine and Consultant Rheumatologist at LUTH, Olufemi Adelowo, the cause of lupus remained unknown though there are many hypotheses”, Adelowo said.

“One thing that is certain is that the disease results from a malfunction of the protective system. Some persons and families appear prone to these conditions.”

“Because there is increased rate of lupus, we need more drugs for treatment; but they are expensive. And many of the drugs in Nigeria are said to be fake.”

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