yvette_coursey_frank_hayden_web.jpgSpecial to South Florida Times

WEST PALM BEACH — The Sickle Cell Foundation of Palm Beach County and the Treasure Coast held an appreciation gala for its outgoing CEO of more than 13 years, as Yvette L. Coursey was honored by co-workers, family and friends during the event July 13 at the Palm Beach Airport Hilton in West Palm Beach.

Coursey said she thinks one of her greatest achievements was educating the larger community about the disease.

“Sickle cell is a global, hereditary disorder that affects everybody (not just African-Americans),” she said. “Educating the community is a double-edged sword. It can be rewarding and challenging.”

Generating money for the foundation’s outreach in an economically depressed time has presented many hurdles. In spite of fundraisers, writing many grants and communicating with donors on a regular basis, financing was still an issue, Coursey said.

“Sufficient funding was the biggest challenge. If people don’t know about your cause, then they tend not to give.”

Sickle cell anemia affects about 70,000 people in the United States, the majority of African-American descent, according to the Centers for Disease Control (CDC).

It is an inherited disorder that distorts red blood cells, leaving them with a sickle-like shape, making it difficult for the cells to pass through blood vessels and arteries.

Incoming CEO Frank Hayden said many people are unaware that this disease can affect anyone from a number of cultural backgrounds.

“Sickle cell affects not just African-Americans but people of color. Jewish folks, Hispanic folks as well,” he said, “and that’s why it is so important that we educate people about the disease and how to deal with it.”

Board member John Swain said even though information is available, many in the African-American community do not seek it out because of the stigma attached to it.

“I had a niece, in her 50s, who revealed to me that she had sickle cell trait. I was sort of floored by (that news),” he said. “For many years it was thought of as a disease that only black people could get.”

Sickle cell trait is (also known as being a carrier) occurs when a person has one sickle cell gene and one normal gene, according to the CDC. Approximately one in 10 African-Americans carries the trait. Swain said the foundation provides information to the public on how to manage the trait.

“Many people do not know they have the trait.  In the last couple of years, there have been young athletes between the ages of 18 and 25 years-old who have played or trained vigorously and then walked off the court and dropped dead,” he said.

Those living with the sickle cell disorder may experience crisis, pain because blood vessels can become blocked or the defective red blood cells may cause damage to organs in the body. Many living with the disease may need hospital stays several times each year.

Hayden said he wants to continue Coursey’s legacy of educating the public about the disorder and giving back to the community.

Coursey said people have been very gracious and generous to her and the foundation but there is still a lot of work to be done.

“I want to thank the community,” she said. “We’ve made progress. We’ve grown, but we need to continue to grow.”

Photo:from left Frank Hayden and Yvette Coursey