Dr. Sunny Kuku, a renowned endocrinologist, says a number of strategic steps need to be taken in the areas of tracking, treatment and prevention of sickle cell disease to bring further reliefs to sufferers and mark down the occurrence of the ailment.

Dr. Kuku says this is despite commendable accomplishments in the treatment and management of sickle cell disease in Nigeria, which have brought about improvements in survival rate, life expentancy and quality of life for the afflicted.

About 50 million people are living with sickle cell disease globally and Nigeria is the epicentre zone with about 4-6 million people living with the disorder. One in every four Nigerians has a sickle cell trait.

Kuku says going forward, government needs to set up special clinics where patients can get free or subsidised sickle cell treatment and establish more screening centres for detection at birth because the cost of treatment of the ailment is much higher than most of the afflicted can afford.

He further says government should emphasise prenatal testing, premarital testing and pre-employment testing, to reinforce management and occurrence controls.

Kuku, who is co-Founder of the renowned Eko Hospital, made the call in Lagos at a public lecture with the theme: “Sickle Cell Disorder is Not a Death Sentence”.

The lecture was organised by the Sickle Cell Foundation of Nigeria (SCFN) in Lagos to mark 2023 World Sickle Cell Disorder Day, with theme: “Building and strengthening Global Sickle Cell Communities, Formalising New-born Screening and Knowing your Sickle Cell Disease Status.”

“Sickle Cell disorder was formerly associated with early death but today, enough evidence has been deduced to show that the disorder is not a death sentence,” Kuku said.

“This is as a result of improved prevention, early diagnosis, improvement in management of drugs, bone marrow and gene transplants,” he added.

He observed that with improvements in the management of the ailment, life expectancy for the afflicted had gone up from five years to 50 years.

“Pre-marital diagnosis and pre-employment diagnosis and other medications have improved the survival rate,”

The doctor said that one of the biggest problems with sickle cell disorder patients was ‘psychosocial’.

“People look at them as being abnormal because they get crisis at all times and the things their mates can do, they can’t do.

“So, we train their mothers to support them, and then also give the children themselves some psychotherapy treatment to help the overcome psychosocial problems,” he said.

Kuku explained that the psychosocial problem with sicklers was very serious and traumatic, as the sudden crisis makes carriers wonder what they are living for.