June 29 is the day designated by the World Health Organization (WHO) to mark World Scleroderma Day. Nigerians from all walks of life and patients suffering from Scleroderma were gathered at the Rheumatology Clinic, LASUTH to create awareness about this relatively unknown disease.
According to Rheumatologists, Scleroderma is a chronic autoimmune disease characterized by hardening and tightening of the skin and connective tissues. It results from an overproduction of collagen, leading to fibrosis of the skin and internal organs. There are two main types: localized scleroderma, which affects only the skin, and systemic sclerosis, which can affect internal organs like the lungs, heart, kidneys, and digestive tract.
Symptoms vary widely but often include Raynaud’s phenomenon (cold and discoloured fingers or toes), skin thickening, and joint pain. The cause is unknown, and there is no cure, but treatments focus on managing symptoms and preventing complications.
Health officials at the event advised that early diagnosis of the disease would help patients to manage it better.
Dr Hakeem Olaosebikan Senior Lecturer and honorary consultant Rheumatologist, LASUCOM/LASUTH, Ikeja spoke about the likely causes of the disease. He said: ‘’Scleroderma happens when the body produces too much collagen and it builds up in body tissues. Collagen is a fibrous type of protein that makes up the body’s connective tissues, including the skin.
He further stated that ‘’Experts don’t know exactly what causes this process to begin, but the body’s immune system appears to play a role. Most likely, scleroderma is caused by a combination of factors, including immune system problems, genetics and environmental triggers.’’
Elizabeth Onuoha, a leading Scleroderma campaigner and the author of the book ‘’Living with scleroderma,’’ spoke with Newswatchplus about some of the challenges being faced by sufferers of the autoimmune disease.
She said: ‘’The major challenges aside costs of medication and laboratory tests which we do as often as possible, is the attitude of people. People who are ignorant about scleroderma think they stand the risk of catching something from people living with scleroderma if they come close to us. This is not true. Scleroderma is not contagious and nobody is going to catch anything from people living with scleroderma, but because we have to live on immunosuppressant medication to calm down and disarm our over active immune system, our body loses the ability fight any disease and as a result we become a walking magnet for any communicable disease other people may have.
‘’Therefore the truth is that people living with scleroderma run the risk of catching something from others because their bodies can’t protect them anymore.
It important people understand this and appreciate the fact that those living with scleroderma are at their mercy.’’
When asked about the government supporting them or not, Onuoha-Ozumba expressed that the government isn’t doing anything to support them. The author said: ‘’as for government knowing about the existence of this condition and doing anything to help those living with the condition or creating awareness, the answer is no. Government is not doing anything. Maybe because condition is rare and not as popular as cholera or COVID where much noise can be made and huge budgets allocated to it.
Scleroderma is deadly if not well managed, people die out of ignorance and complications arising from the disease.’’
Lawyer and Scleroderma crusader, Tara Aisida in a similar vein spoke about the fears of those who know nothing about the disease.
‘’Scleroderma is not infectious. It isn’t the person’s fault. It is not your village people. It is genetics. And you don’t have a control over genetics. The only thing you can control is your environment. And even that to an extent. There are so many diseases we don’t know of. I didn’t know of Scleroderma until I was diagnosed with it. Until you hear of something, you don’t know it exists. I think people should have an open mind to patients and be supportive,’’ she posited.
When asked about how she knew she had it, Aisida said ‘’for me, the first symptom I got was what I thought was an allergy reaction. But I have never been allergic to anything in my life. I went to the doctor and ran some tests but nothing came up. But I kept on having swellings over my body: from the crown of my head to the sole of my feet and it would itch. They said maybe it was hormonal changes, menopause and all. That was in 2021. It subsided in 2022. Everything was almost normal. And I realised that I had discoloration work on my cheek and thought maybe age spot. And I realised my scalp was peeling a lot. And I thought why would this happen. And the final thing I realised was my mouth couldn’t be opened wide. Later I started feeling fatigued. As a result, I went back to the doctor. They ran tests and I was diagnosed with it.’’
Consultant Rheumatologist at Lagos University Teaching Hospital, Dr Igebu Etseoghena alongside Aisida and Onuoha-Ozumba were on News Central TV Breakfast Wellness Show.
Speaking of some of the challenges, the doctor said: ‘’people with Scleroderma are stigmatised as the disease changes their physical appearance. People often think you have a communicable disease because of the physiological changes.’’
‘’A lot of people don’t have health insurance because they can’t afford it. After diagnoses they have to pay out of pocket. Many patients can’t afford to buy the medication or run some tests. Unfortunately, it’s a disease you don’t need to stay far away from your health providers because there are routine tests that are run regularly. We decided to get support groups for people to donate to support the struggle. Recently people have been trying to put the Scleroderma drugs into the health insurance scheme. With the rise in the dollar rate, Scleroderma drugs have become very expensive. Some patients complain that one tablet is N1,500. And sometimes they have to take four tablets per day.’’
Dr Igebu Etseoghena and other health providers are calling on Nigerians and the government to support those living with Scleroderma.
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