Scleroderma: Patients, doctors, call for govt support

On Saturday, friends, family and professionals gathered at the MRC auditorium at the Lagos State University Teaching Hospital, LASUTH to mark the World Scleroderma day.

June 29 is the international world Scleroderma day. It is a day dedicated to spreading awareness about this life threatening disease.

Till date, most Nigerians do not know what Scleroderma is. Most have never heard of it. However, there are some survivors of this life threatening disease who have made it a duty to educate the public by giving it the needed awareness.

One of them is Ms Elizabeth Onuoha-Ozumba, author of “Living with Scleroderma. Another strong voice is Ms Sarah Jatto, founder of Me and Sclero Foundation.

Scleroderma is an autoimmune disease that affects the skin which causes the skin to become thick and hard. It can also affect the internal organs. Many people do not know about the disease because it is rare. It is not contagious and it has no cure.

Autoimmune diseases develop when the immune system which is supposed to protect and defend the body against diseases and infection suddenly starts attacking and destroying the healthy cells within the body. The immune system simply goes against itself.

This disease is an autoimmune, rheumatic and chronic one that affects the connective tissues to become thick and hard.

The disease is not contagious and can be well managed if detected early. Scleroderma has no cure. But with early diagnosis and good management people living with it can live their lives.

In Nigeria and Africa as a whole, not much is being done to create the much needed awareness.

People are living in ignorance about this life threatening disease. The ministry of health both in the federal and state levels is yet to step up and join in the fight against this condition.

The only effort being made to create awareness so far is the initiative of the doctors at LUTH and LASUTH who bring patients together every June 29^th which is the World Scleroderma day.

At the event, doctors talk to patients and other people about Scleroderma and the symptoms to look out for.

Dr. Olaosebikan Hakeem speaking at the event said, “Scleroderma is not a death sentence. People can live their normal lives if detected early. Early detection also helps the drugs function in the body. Unfortunately, most people come to us when it is at the critical stage. When it is full blown and in that situation, the drugs may not work.

Speaking further, he said “Scleroderma affects vital organs in the body. The heart, kidney liver and so on. No matter the organs it affects, if detected early, it can be managed.

“When one has Scleroderma, for some reason the body appears to be fighting itself from head to toe. The white blood cells that should be fighting germs turns on itself.”

“A major problem is that the drugs are very expensive and scarce. You may have the money and not be able to buy the drugs. I am pleading with the government to come to their rescue.”

According to Sarah Jatto, she has been able to come to terms with Scleroderma. She said it was very difficult in the beginning because she did not understand what it was all about. She said, “I was born as a bouncing baby girl as they would say in Africa. I was a normal child. Then things changed.

At the initial stage it was very difficult for me. When I wake up in the morning it would look like I was involved in a boxing match at night because my face would be swollen.”

“I want to make it clear that Scleroderma is not a communicable disease. For instance, a cold could be passed on but Scleroderma can’t. I call on the government to be supportive,” she said.

Some people have been able to look normal even with the disease. Elizabeth Onuoha-Ozumba, who survived this condition against all odds, does not look like some who has it. In fact, one would never know if not told.

When asked how it affects them, she said “The disease affects us in different ways. It varies from one person to another. As we speak some sufferers of Scleroderma are in the hospital. Only a few of us could make it to this event. If you look at us all, we do not look the same. Some have even lost their hairs.”

Israel Usen who is 21 years old has been battling with Scleroderma for 12 years as he was diagnosed at age nine. While trying to hold back tears, Usen told the audience that his life is very difficult because he is poor and also battling with the disease. He said, “I would like to see government come to our aid. As it stands it seems the government doesn’t care about us. I want to thank LASUTH and everyone who is supporting us. We rise by lifting others.”