A Nigerian author, Shehu Mohammed, on Saturday in Abuja, said the Nigerian society lacks empathy and understanding for sickle cell warriors and that the situation explains why they are still being ‘discriminated’ against.
He said sickle cell warriors also lack adequate information on how to take care of themselves so as to, at least, reduce the impact of the disorder on their well-being.
Mr Mohammed, a sickle cell warrior, said this while launching his new book, ‘I’m a survivor: The story of my triumph over pains’ in Abuja on Saturday.
The launching coincided with the World Sickle Cell Awareness Day marked globally on June 19, yearly.
Mr Muhammed, a former general manager (finance) of Media Trust, publishers of Daily Trust newspaper, and a graduate of the Obafemi Awolowo University, Ile Ife, said he wrote the book to bust several myths concerning the disorder, principal of which he said was that they don’t survive.
The book was aimed at proffering solutions to the lack of awareness about the disorder, the 55-year-old author said, adding that it also contains his life’s journey as a sickle cell warrior and various survival techniques he deployed to weather the storm.
“It is a motivational book relevant for anyone not only going through sickle cell pains but any challenges,” he said, adding; “The book gives hope and reassurance to warriors that despite our challenges, we can still realise our dreams. The book reveals that the story of warriors is not all about death and incapacitation.”
He said the donation from the launch would go towards “making life meaningful for sickle cell warriors”. One of his projects, he added, would be to enrol 100 indigent sickle cell warriors on the NHIS Scheme so they can access health care.
“Later on, I plan to create a sickle cell hub where warriors can have access to psychologists and counsellors to discuss their worries and fears,” he said. “The hub, when functional, will have facilities for business training and development so as to make warriors independent economically.”
The event was well attended by many from different sectors in Nigeria and also in the diaspora via a virtual engagement.
Meanwhile, commendations also poured in for the author from different quarters during the launch.
Odoh Okeyondo, an author said, “this is a revealing book of courage and faith when the odds against the sickle cell patient (warrior) stack several stories high”.
“My takeaway for this timely book is the motivation I got to never give up,” said Halima Nagado, founder, Sickle Cell Anaemia Foundation. “The author suffered traumatising complications but he didn’t allow it to depress him. Instead, it made his dreams achievable.”
And for Josephine Olunaike, founder of Beulah Sickle Cell Foundation, the book is a lifesaver.
“The beauty of the book is that it did not just outline the troubles, shame, agonies and societal myths associated with sickle cell, it also proffers realistic advice and practical solutions health wise, emotionally, mentally and psychologically,” she said.
Sickle cell anaemia is a form anaemia — a condition in which there are not enough healthy red blood cells to transport adequate oxygen throughout the body.
Premium Times reported how since 2008, World Sickle Cell Awareness Day has been held annually, in order to help increase public knowledge and raise awareness of Sickle Cell Disease (SCD) and the struggles sufferers and their families go through.
The date 19 June was chosen to commemorate the day on which a resolution was officially adopted by the General Assembly of the United Nations, recognising SCD as a public health concern.
Nigeria has the highest burden of Sickle Cell Disease (SCD) in the world and is also the top sickle cell endemic country in Africa, with an annual infant death of about 150,000 representing more than eight per cent of infant mortality in the country.