Experts from around the world have met in Britain this week to mark 100 years since sickle cell was discovered in the West. In that time, scientists say, treatment has come a long way -- but it isn't reaching those in Africa where it's needed most.
According to the World Health Organization more than 200,000 babies are born with sickle-cell anemia in Africa every year.
But medical specialists say care for those living with the disease in Africa is limited.
Jemima Dennis-Antwi, from the International Confederation of Midwives, spent 10 years as a specialist behind the first new born screening program for sickle cell in Ghana.
She says information on sickle cell disease is not widely available and the majority of people don't understand the disease.
"They're very fatalistic that people with sickle cell disease of course will not survive," Dennis-Antwi said. "They are considered as people who just pass through because they are going to die anyway. And therefore parents live in perpetual fear wondering when their child is going to die."
Sickle Cell Anemia is a genetic blood disease. Red blood cells change shape in a way that limits their ability to carry oxygen around the body. It can lead to organ damage and is severely painful.
The majority of people with sickle cell disease are of African or Caribbean descent.
There is no cure for the disease. But simple steps like a healthy diet, vaccinations, and antibiotics can limit the pain and help people to live longer.
Dennis-Antwi says people in Africa aren't benefiting from these easy remedies.
"People tend to associate it with metaphysical causes and therefore tend to seek metaphysical solutions or remedies for addressing sickle cell disease and that has implications for the survival of patients because then they are not sending the patient to the hospital and rather seeking traditional forms of remedies for their child with sickle cell disease," she said.
Kwaku Ohene-Frempong, Professor of Pediatrics and former director of the Children's Hospital of Philadelphia, says children in Africa need to be screened for sickle cell so that early intervention can begin.
"There is enough known about the disease and how to manage it that many who are now dying as young children with sickle cell disease do not need to die," he said.
But he says not enough money is being put into fighting the disease. He says the international community focuses on issues like clean water and fighting major diseases such as malaria and HIV/AIDS.
"Even though sickle cell disease has been very well known in African communities for a long time, Ministries of Health have not paid much attention to it," he said. "Because much of the help they get in dealing with diseases has to do with infectious diseases and nutritional problems."
According to the World Health Organization in Nigeria the prevalence of sickle-cell anemia is about 20 per 1000 births. This means that in Nigeria alone, about 150, 000 children are born annually with sickle-cell anemia.
