By Sola Ogundipe

It all began subtly one day in mid-2010 when I began feeling numbness on the fingers of my right hand. I dismissed it as possible symptoms of stress I was encountering as a result of studying for my professional exams. But rather than get better, the numbness, inflammation, discoloration and pain worsened and spread along my arm. I was having difficulty using the hand normally and even prescribed medication did not help.

Elizabeth

I was worried about this strange development and as it gradually worsened, I was compelled to seek medical help. The first hospital I went to was the Federal Medical Centre, Ebute Metta, Lagos, where a blood test and x-ray revealed nothing. I was referred to a private medical laboratory at Oshodi. There, I gathered that my blood samples were to be flown abroad for analysis.

When the test result was released, I went back to the Federal Medical Centre, where the doctor broke the news that I had an autoimmune medical condition. I had never heard of this disease, it was my first time so I probed. The doctor told me something happened inside my body and was making my immune system to fight against my body.

I was referred to the Dermatology Clinic of the Lagos University Teaching Hospital, LUTH where I was put through another set of diagnostic tests. A sample of my blood was taken and it was after the result was released that Scleroderma was confirmed.

Scleroderma is an autoimmune disease that affects the skin and can also affect the internal organs and once it does that, it’s deadly. It is an invisible disability, you can’t see it, but whoever suffers it knows the limitations. There are a number of auto immune disorders, but for scleroderma, people don’t get to know about it on time. By the time they realise it, its almost too late, and so much damage would have been done to the skin and to the face and all over.

So to be able to manage it well, you need to be diagnosed early, but many affected people don’t notice it early. With all this in mind, I decided to write my story and stories of other people suffering from this disorder so that other people can learn from it and know that we am not bewitched. It is also to encourage the authorities to do something about it because really, health ministries, the state and federal governments have done nothing to create awareness about this condition.

We would love a situation whereby on every June 29, that is World Scleroderma Day, there would be more focus on scleroderma. Luckily at PathCare Laboratory, tests for scleroderma can be done here in Nigeria. The test or screening cannot be done in government hospitals yet. I recall an instance, when I got to the LUTH for some of my tests, I was told they couldn’t be done there because the facilities were unavailable. I was sent to a laboratory outside the hospital and there I was told that my blood sample needed to be flown abroad for analysis.

Scleroderma may not be like dreaded Ebola Virus Disease, but it’s deadly even if not contagious. All we need is help in creating awareness. There should be posters in all the government hospitals about scleroderma just like there are posters of malaria and other illnesses. Such posters should educate people about the signs to watch for and should help promote early diagnosis.

Scleroderma has no cure as for now but with good management which comes with early diagnosis. The main drugs are the immune-suppressants which are quite expensive and very scarce. They have side effects and are not tailored to cure scleroderma but are being utilised experimentally.

What they do is to suppress the immune system so as to stop it attacking the body. But suppressing the immune system has its own downsides. The body may not have the ability to fight other diseases and you become a walking infection magnet within and outside your home. Sometimes, I go out there and come back to discover that I have the flu. There are times I may be in a public bus and someone beside me is coughing or sneezing, and I am always looking for the nearest window to put my head out because I know what that might do to me.

I am forced to be very health conscious. There are so many things people take for granted, that I do not dare take for granted. I cannot just eat anything or anyhow because the condition has affected my digestive system. With this condition, support and care from family and friends are very necessary. It is not something you can go through on your own.

For some people who suffer this outside the country they can’t work because the sickness has affected their fingers. Some get so hypersensitive to cold environment and their fingers get so disfigured that they can’t use them.

A friend in Abuja lost her job because she had a flare up that made her unable to go to work. By the time she was able to come out, her appointment had been terminated. This is somebody living on immune suppressant which is very expensive, now how is that person going to cope with no job? This is why the government should be aware. This condition should not be neglected.

I remember some years back when people avoided me, I used to work but I had to stop because I spent three days out my working days in LUTH getting one diagnosis or the other but my boss understood. A friend in the United Kingdom, who came for the book launch, narrated how people were staring at her. She had wanted to buy something but no one was willing to collect money from her out of fear of contracting her disease.

But in truth the reverse is the case; with her immune system suppressed, she is the one at risk. However, people don’t know these things and this is why I had to write about it so that people out there can be assured that they are not in danger of contracting anything from us.

My book is titled: Living with Scleroderma: A Survivor’s Story Of Hope Against All Odds. It has paperback and hard cover versions. The cage and butterflies on the cover are meaningful. The butterfly symbolises that life is beautiful and that those people living with scleroderma are beautiful people but unfortunately they find themselves locked up in this cage which is the scleroderma, an auto immune deficiency. We are attempting to break free of that cage, fly out and be free.

When I finished writing my book and wanted to publish it, I told a friend about it and she advised me to write to the Lagos State Government, that they would be passionate about it, because this is the first of its kind in Nigeria and Africa that someone living with this illness is coming out and writing about it. At first, I was sceptical but I decided to try, so I wrote a letter to the Lagos State Governor through the Ministry of Health. I was quite surprised that they actually received my letter and acknowledged. Few weeks later, someone called from the Ministry and I was told to report to the office.

I went there with an open mind, but nothing was in the offing. After my encounter with the Lagos State government, I still was able to go ahead and publish the book, with the help of a publisher who believed in me and in what I was trying to achieve through my story. Anyway I sent two copies of the book to the Lagos State Ministry of Health. I am hoping that the State and Federal Government would put the book to good use and bring about the required assistance.

We have a WhatsApp group for people living with the condition to come together and become sources of help and encouragement to one another. At times while living with this condition and reading stuff about it online I partially become my own doctor. Sometimes before I go for my hospital appointment I do some research and I know how I have been feeling for a while and when I get to the hospital and the doctors tell me something I can as well suggest other things worth trying.

This condition has humbled me, made me aware that in this life, no matter the condition you find yourself you should give it your best shot. I have been on so many medications all these years, sometimes I wake up at night staring at the ceiling and asking myself whats going to happen in the next couple of years down the line.