Towards overcoming the challenges associated with sickle cell disorder, Nigerians living with the genetic disorder, as well as their family members, have been urged to stop seeing the condition as a death sentence.
The National Director/Chief Executive Officer, Sickle Cell Foundation Nigeria, Dr. Annette Akinsete, made the appeal during this year’s annual celebration of the Sickle Cell Club, Lagos, held at the Foundation office recently.
The annual event is a time that the Sickle Cell Club, Lagos, brings children living with sickle cell and their families together to have fun and praise God for His mercies upon their lives. Akinsete, in her remarks, said people living with SCD now live longer and have healthier lives with advancements in treatment and management of the disorder.
She asked parents to note that carriers of sickle cell gene, could, today, lead a productive life and get to any level in any field of endeavour, owing to growth in science and technology, which, she said, had made treatment better.
She explained, “We are trying to change the negative connotations associated with the disorder because we hear a lot of negative things about sickle cell carriers. Some will tell you that they don’t live beyond the age of 16, some just 20 and so on. But, we are here to change the narrative and dispel those myths.
“We just want to encourage the children and to let them and their families know that sickle cell is not a death sentence. This is a fact. Treatment protocol is getting better; people with sickle cell are living longer. Currently, we have a 93 year- old woman living with the disorder. We also have those in their 60s and 70s.”
To overcome the myths and misconception about the disorder, Akinsete appealed to carriers of sickle cell gene, including the public to stop seeing sickle cell from the negative perspective, insisting that the negative perception must change.
“They should rather see it from a positive angle because children living with sickle cell are always bright and they come tops in their classes. They do well in every field of endeavour, irrespective of the crisis that they face. That is why we are canvassing for a society that takes care of its vulnerable people. People living with sickle cell must be loved and catered for. Treatment is getting better by the day, so we must support and encourage them, not to see sickle cell as the end of life,” she added.
SCD is a major genetic condition in Nigeria. The country has by far the largest burden of the disorder anywhere in the world. Over 40 million Nigerians are carriers of the sickle cell gene and an estimated 150,000 babies are born every year with sickle cell anaemia
(Hb SS).
In her welcome address, President, Sickle Cell Club, Lagos, Mrs. Ayo Otaigbe, said the club, through its activities, had continued to increase public awareness and knowledge of sickle cell disorder in Nigeria.
“We continue to show and advocate that affected persons can live a normal, healthy and pain-free lives if they are well-managed and thereby dispel the various myths, rumours and misinformation surrounding the condition,” she
said.
Otaigbe noted that the club was established in 1984 with the primary aim of helping members of the society who had sickle cell disorder, through appropriate medical and social care, to live normal lives as much as
possible.
Also speaking at the event, Father of the Day, who has been living with sickle cell disorder for over 68 years, Mr. Wale Fanu, said there were so many people that had sickle cell and were doing well today.
“In my own case, I and my mother were asked to go to Zaria to do blood test and bring back the result to Lagos. It was after then that one of the doctors told my mother that my condition was sickle cell. He told her that most people who had this type of genetic problem usually died around 20 to 21 years of age,” he said.
The film producer added, “But to the glory of God, I am still here today, close to 70 years. A lot of people look at me and wonder how I have survived all these years. One of the biggest
secrets to it is that, right from the first day; you have to study the management of sickle cell crisis for you to be able to handle the
situation.”
