Sickle cell hits home — and homeland

Rambo photo

Sickle cell researcher Ohene-Frempong

Photo by Candace diCarlo

As a young man in Ghana, Professor of Pediatrics Kwaku Ohene-Frempong knew he wanted one day to do something that would benefit the children of Africa.

He discovered what that something was by chance, as a Yale undergraduate.

“I didn’t know anything about sickle cell disease in high school,” he said. But a lecture he attended at Yale Medical School introduced him to the genetic disorder that affects mainly people of African descent.

“Afterwards, looking around, I realized that this was what killed my cousin,” he said.

Later, as a young adult, he discovered that the disease affected him as well. A genetic test he took while training for the 1968 Olympics revealed that he carried the sickle-cell gene, and after his wife got pregnant, he found out she had it too. Their first child was born with sickle cell disease.

But their child was fortunate enough to be born in the United States, where more advanced treatment is available for the disease. For children in Africa with sickle cell, the prognosis is bleaker.

“The disease is the same [in Africa and America],” the 55-year-old researcher said. “But environmental differences between Africa and the United States mean that it has a much worse effect on Africans.”

A much higher percentage of Ghanaian babies — one in every 50, as opposed to one in every 4,000 in the United States — are born with the disease each year. The figures for Ghana mirror those for west and central Africa, the region where the disease is most prevalent, as a whole, Ohene-Frempong said. And while 95 percent of those American children live past age 20, only five percent of the Ghanaians live to see their fifth birthday.

The reasons for this, he said, include lack of timely diagnosis and lack of knowledge of the disease. “And even where knowledge exists, facilities and resources are not adequate.”

The Comprehensive Sickle Cell Center at the Children’s Hospital of Philadelphia, which Ohene-Frempong heads, has been working to remedy this situation. In 1992, the center entered into a partnership with a teaching hospital in Kumasi, Ghana’s second-largest city, to run a clinic for children with the disease. From 10 patients at its opening, the clinic has grown to serve 5,000 children annually, and the demand for services exceeds the clinic’s capacity.

Now Ohene-Frempong is spearheading a $1.5 million fundraising effort to build and endow a new research and treatment center in Kumasi where researchers from Africa and around the world can share knowledge about the disease. The center will be named for Otumfuo Osei Tutu II, the king of the Asante nation in Ghana, who kicked off the fundraising drive with a visit to Penn this past July.

According to Ohene-Frempong, medical science knows a lot about sickle cell disease. “The NIH calls it the best-studied disease of man.”

Yet less progress has been made towards a cure than for other genetic diseases, a situation Ohene-Frempong said is partly due to whom it affects and where it is most prevalent.

For more information about the Sickle Cell Disease International Foundation for Research and Treatment, call Ohene-Frempong at 215-590-3423 or e-mail

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Originally published on August 30, 2001