Sickle Cell Day Hospital Patient Offers Advice — and Hope
November 2004 — Casey, 37, was born before it became mandatory to test infants for conditions like sickle cell disease. It wasn't until he was 3 and hospitalized for a fever that wouldn't respond to treatment that Casey's parents learned he was one of approximately 400 African American children born each year with sickle cell disease. With no family history of the disease, they were shocked and thought their son had been misdiagnosed. But they did everything they could to get him the care he needed.
As an adult, Casey found a primary care physician who specialized in hematology, but he still needed to go to the Emergency Department (ED) for care. "I went to the ED when I needed treatment, but unless I was in severe pain or having breathing problems, I would have to wait a long time," says Casey. "When I am in pain now, I go the Day Hospital and they treat me immediately." He goes to the Sickle Cell Day Hospital at Memorial Regional Hospital, Florida's first and only facility dedicated to the treatment and support of sickle cell patients, which opened in May 2003. The doctors and nurses at the Day Hospital know Casey and understand his unique medical needs.
In addition to the physical care he receives, Casey takes advantage of the Day Hospital's monthly support group, led by Lillian Boone, MD, psychiatrist on the medical staff at Memorial Regional Hospital and Joe DiMaggio Children's Hospital. "It is helpful to know that you are not the only one in pain," says Casey, who also has the strong support of his wife, Sherrell, their two children and his church. As a patient of the Day Hospital, Casey can meet with Dr. Boone on an individual basis, as well.
Prompt Care Is Vital
Over the years, Casey has learned to live with this disease and offers valuable advice to others. "You have to take care of yourself. It's important to eat well, exercise, take vitamins and stay hydrated. And when you're in pain, don't wait to get treatment. The longer you wait, the longer it takes to reduce the pain, which means you might have to be admitted into the hospital," says Casey. "I do believe that one day there will be a cure."
For additional information about the Sickle Cell Day Hospital at Memorial Regional Hospital, call (954) 265-6945, Monday through Friday, 9am to 5pm. Assistance is available in English, Spanish, Creole and French. For assistance after hours, please call (954) 265-6338.