yvette-coursey_shirley-miller_web.jpgSpecial to South Florida Times

WEST PALM BEACH — Nearly 300 people were in attendance at the Airport Hilton in West Palm Beach on Saturday as the Sickle Cell Foundation of Palm Beach County & the Treasure Coast paid tribute to its founder, Eva W. Mack, as well as the many volunteers, donors and supporters who assist the agency in its commitment to improve the quality of life for people and members of their families affected by sickle cell disease and the trait.

Guest speaker Shirley Miller, an author, patient advocate and a person having long lived with sickle cell disease, educated the audience on the differences between the sickle cell trait and sickle cell anemia, the actual disease.  She felt it was important to let the public know that the sickle cell trait is a genetic condition, not a disease, and that the only way to know whether you have the trait is through testing. 

Jim Sackett, former news anchor at WPTV Channel 5, was master of ceremonies, guiding the group through the program. Near the conclusion of the luncheon, a stunned audience was treated to a series of lengthy accolades from Sickle Cell Foundation staff and board members, as it was announced that their CEO, Dr. Yvette Coursey, was retiring and ending her 14-year career as the administrator. 

“We don’t know what we’re going to do without her,” said board member Charlie Hudnell during his tribute.

Keynote speaker Miller, noting some common misconceptions about the incidence of sickle cell among various ethnic groups, said that 1 in 10 African Americans and 1 in 30 Hispanics have the trait, but it is common in persons from Africa, Asia, Mediterranean, Middle East, Caribbean, India, south and Central America.

Too little is known and more needs to be publicized about the role of the sickle cell trait in the life of young athletes, said Miller. The genetic trait has been linked to athletes’ deaths due to overexertion and the blood’s tendency to sickle, sending a patient into crisis even when they do not have the full disease.

Certain symptoms that arise during heavy exercise or sporting activities can lead to more serious symptoms and even death.

Although more than 15 college football players and several high school athletes have died from exertional sickling, Miller insisted that sickling injuries are preventable with screening and proper precautions.

“You can live with it, and manage it,” she said, “once you know the triggers and the things that make you sick.”

Poignant was the realization that the speaker herself suffers from sickle cell disease and has written a book, The Stranger Within, which chronicles her journey with the pain of the disease and how she has learned to live life – not with a death sentence but to live life abundantly, to have gratitude for each day, and to reach out to help others understand how to manage the illness. She stated that the illness is “manageable” and that patients can “overcome.” 

Miller has become an advocate for patients of sickle cell and has had an active career counseling, speaking, raising funds with various sickle cell charities, lobbying for funds for a cure and working to educate legislatures on a national level to expand the base of education and information about the disease.

The luncheon concluded with the traditional singing of That’s What Friends are For, which has been the signature closing song for the annual affair.



EXPERTS ON SICKLE CELL: During the 23rd annual Eva W. Mack Sickle Cell Luncheon, Saturday in West Palm Beach, audience members learned that Dr. Yvette Coursey, right, the agency’s longtime CEO, is retiring. Shirley Miller, left, a West Palm Beach native and nationally recognized authority on living with the disease, shared key points on managing it from her book, The Stranger Within.