Learning more about sickle cell disease and how it affects Black people

Jun 19, 2023, 2:30 PM | Updated: Jun 22, 2023, 6:01 pm

SALT LAKE CITY — Monday is World Sickle Cell Day. The purpose is to increase the public knowledge and understanding of sickle cell disease.

Health experts say the disease disproportionately impacts African American communities.

Dr. Richard Ferguson, chief medical officer at Health Choice Utah and founder of Black Physicians of Utah, explains what the disease is.

“Sickle Cell is a genetic blood disorder that affects structuring, functioning of red blood cells,” he said. “And it causes them to sickle. Most common in those of African, Middle Eastern and South Asia decent.”

Ferguson tells KSL NewsRadio that it is impacting one in 10 Black births in Utah.

Due to the low number of people impacted by the condition living in state, Ferguson says the Utah healthcare system isn’t where it needs to be it terms of helping those with the disease.

“The healthcare system, the infrastructure itself, often isn’t as aware of how to treat this condition that is miserable for many young African Americans, I emphasize young.”

Ferguson says the average life expectancy of someone with sickle cell is 56 years.

“Which has increased,” he said. “In the 80s, you wouldn’t see anyone live past 45.”

Bringing more awareness to sickle cell disease

Ferguson is asked what needs to be done to increase awareness.

“I think part of it is discussions and introductions of awareness such as this,” he said. “…. We’re also going to need to encourage and make doctors and trainees more aware of treatments.”

Currently, Ferguson says the only cure is a bone marrow transplant.

“But often that has to be repeated,” he said. “And it doesn’t work for everyone.”

Because the disease is painful, Ferguson says it’s important for those who have it to manage it. He says often times there will be a 30-year-old who will have a stroke or a heart attack because the disease wasn’t managed properly.

Ferguson is asked what are the signs or how do you know if you have sickle cell?

“Often times it’s diagnosed at birth,” he said. 

Ferguson says even something as simple as the cold or walking outside during the winter can create serious problems for those with sickle cell.

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Learning more about sickle cell disease and how it affects Black people