Elizabeth Onuoha-Ozumba is one of the leading figures with regards to creating and spreading Scleroderma awareness in Nigeria. In fact a google search of Scleroderma in Nigeria brings up her name before any other name. Last year, Elizabeth, the author of ‘’Living with Scleroderma’’ had the opportunity of going on a tour of Lusaka, Zambia, Uganda, Rwanda and Kenya where she had the opportunity of meeting with the press and speaking on Scleroderma with a view to creating and spreading awareness about scleroderma which sadly affects people all over the continent of Africa. Elizabeth hopes that someday African leaders will sit up and take notice and ultimately lend their voice towards creating awareness about scleroderma all over Africa.
Scleroderma, also known as systemic sclerosis, is a chronic autoimmune disease characterized by the hardening and tightening of the skin and connective tissues. This condition can affect not only the skin but also internal organs such as the heart, lungs, kidneys, and digestive tract. The exact cause of scleroderma is unknown, but it is believed to involve an overactive immune system leading to increased production of collagen, the protein that forms the connective tissues.
In this interview with Newswatchplus’ Yusuf Mohammed, to mark World Scleroderma Day, founded by the World Health Organization (WHO), Elizabeth Onuoha-Ozumba talks about life with the autoimmune disease.
Newswatchplus: When did you get diagnosed with Scleroderma and how has life been living with it?
Onuoha-Ozumba: I got my diagnosis in February 2011 after I started experiencing the symptoms last quarter of 2010. It was a difficult time for me prior to getting a diagnosis as I was running round in circles literarily trying to find out what was wrong with my body and why I was experiencing such pains. It was not until my blood sample was flown out of the country for analysis because as at that time there were no laboratories doing such tests to screen for scleroderma in the country. So when my results came back and I had a clear picture of what was going on, I started fighting for my life.
Life has been crazy living with this condition, from having a very vibrant and active life style I have somewhat been forced to slow down because stressful conditions is not good for those living with scleroderma. I have had to make some life changing choices in the way I live my life. Such choices includes living on immunosuppressant medication to calm down my over active immune system and slow down the rate at which it is destroying and attacking my body.
Scleroderma is an autoimmune condition whereby your immune system becomes over active and instead of protecting your body against diseases or rather after protecting your body against diseases, it goes into some sort of over drive and start to attack your body it was meant to protect in the first place.
So I have had live on medication, change my eating habits, amongst other things.
Newswatchplus: What are some of the challenges you face?
Onuoha-Ozumba: The major challenges aside costs of medication and laboratory tests which we do as often as possible, a major challenge 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.
Newswatchplus: Is there any other person in your family living with it?
Onuoha-Ozumba: No one in my family has this condition.
Newswatchplus: What role has the government played in creating awareness and supporting those living with Scleroderma?
Onuoha-Ozumba: Sadly the Nigerian government is yet to ensure a good health care system for its citizens, talk more of playing any role in creating awareness about scleroderma. 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 a very rare condition and not as popular as cancer, HIV AIDS, COVID, sickle cell, and other disease that people live with. Scleroderma is rare and not much is known about it. So we have people living with this condition and die as a result of complications arising from scleroderma without knowing what is going on.
Thankfully science is making progress with respect to finding out what causes scleroderma and also treatment options that can help people live quality lives.
Also with the ongoing awareness campaign that people living with scleroderma try to put out there, we are gradually creating the much needed awareness about this condition so that people need not live in ignorance and suffer in silence.
We hope that through our collective efforts at creating an awareness the government will one day take notice and do something.
