A book on the life threatening disease, Scleroderma, was on Saturday launched in Lagos.
Written by a survivor of the disease, Ms. Elizabeth Onuoha –Ozumba, it is titled “Living with Scleroderma, a survivor’s story of hope against all odds.”
Scleroderma was described as an autoimmune disease that affects the skin which causes it to become thick and hard.
It can also affect the internal organs.
The book was launched on the occasion of the World Scleroderma Day – June 29.
The book is a true life story of the author’s battle and challenges of living with the life-threatening condition in Nigeria.
Onuoha–Ozumba is very passionate about spreading the Scleroderma awareness in Nigeria where little or nothing is known about it.
She is also using her story to inspire people living with various autoimmune disorders and create awareness about the disease in particular.
The key note address was given by Professor Olufemi Adelowo, a consultant rheumatologist at the Lagos State University Teaching Hospital while the book was reviewed by Dr. Ayesha Akinkugbe, consultant dermatologist at the Lagos University Dermatology Clinic.
In his address, Adelowo said there was no cure for the disease yet.
“For now, there is no cure. Just because the disease is rare in Nigeria it is believed to be a spiritual attack. We have a lot of native doctors making money from this. Early diagnosis is the best. The earlier you detect it, the better.
“This disease affects the internal organs, it affects the lungs, it also affects the blood vessels that go from the lungs to the heart which may cause high blood pressure. It can also affect the kidney,” he said.
He stated further: “For now, we have to manage the disease. With due respect, managing this disease is not for pastors or herbalists. It is for those that are properly trained to do so. I commend Elizabeth for putting her experience into a book to encourage other sufferers.”
Also speaking on the disease, Dr. Ayesha Akinkugbe said: “Many sufferers are ostracized from the society. Part of our job is to educate the public not to bad-mouth them. One thing I want to quote from her book is “never judge what you don’t understand.
“Today, people open their mouth and talk nonsense about what they have little or no knowledge of. That is very common on social media.
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“Everything you need to know about Scleroderma is in this book. It gives you an insight about the feelings and emotions about someone living with the disease. It is a must read for everyone.”
The author spoke on the book, saying it was dedicated to all those who suffer from the disease.
Her words: “This book is dedicated to all Scleroderma warriors wherever they may be. I salute you for your courage, resilience and determination. We are faced with a life changing situation and still having the will to live and enjoy the life we have. Scleroderma must never be allowed take our smile or happiness away.
“We will keep on fighting and spreading the Scleroderma awareness till a cure is found so that anyone who is diagnosed with this condition after we may have departed from this world will not have to suffer the way we did.”