dameneka-afrika_web.jpgBELLE GLADE — Sandy Desty doesn’t have sickle cell anemia, the most common inherited blood disease in the United States. But the Belle Glade resident knows all too well the challenges, pitfalls and problems associated with the disease which causes red blood cells to become hard and sticky and form the shape of a sickle.

Desty’s husband Jean, 30, has the disease and can’t work because of his many “crises” – the term given to the bouts of pain associated with the illness.

Whenever Desty’s phone rings and it’s her husband, she has to stop what she’s doing and take the call. He is in the hospital up to 13 times a month with the illness.

Desty, 21, says she’s failed a college course because of it and she’s had to quit her job. To make matters worse, Belle Glade doesn’t have all the resources to deal with the ailment, in addition to the family’s problems dealing with the disease which affects between 90,000 and 100,000 Americans, primarily African Americans.

 “It’s a great challenge and it’s very difficult,” Desty said in a speech at a Sickle Cell Summit in Belle Glade sponsored by the Sickle Cell Foundation of Palm Beach County and the Treasure Coast to mark World Sickle Cell Anemia Day on June 19.

“We’re at a loss when it comes to sickle cell patients,” she said. “We need to find out how to keep them from having so many crises.”

There is no known cure for sickle cell anemia. Doctors can only help patients manage their pain and provide lifestyle tips on how to cope with the illness.

But, in Belle Glade, the challenges are magnified because there’s no hematologist – doctors specializing in blood disease – in the city and  only one doctor who treats adult patients with the illness. Most of the time, the patients have to go to the Emergency Room of the one hospital in the area, Lakeside Medical Center. And there, the patients say, they are sometimes treated suspiciously when they come looking for pain medicine.

It’s a big barrier to getting the help needed, says Desty. “Trying to get a specialist to come out here is nearly impossible,” she said. “And sometimes the doctors don’t know what medication and the doses to give. Sometimes I have to tell them.”

It’s not that the doctors in the Glades don’t know how to treat sickle cell anemia, says Terri Calsetta, manager of Patient Advocacy and Community Health at Lakeside Medical.

“We’re able to manage them in the hospital. The doctors manage their care very well,” said Calsetta. “It’s that we don’t have enough case management to get them to live the proper lifestyle to manage the illness overall. They end up seeing a doctor only when they have a crisis.”

So far, there’s only one case manager in the Glades area and she has to deal with about 20 patients. Tenesley Lovely, case manager for the Sickle Cell Foundation for Palm Beach County in the Glades, says there may be more patients who need help.

“We need more case managers because some clients complain that they haven’t seen a case manager,” said Lovely, who does intake and sets goals and plans for treatment for patients with the disease or its other form, sickle cell trait.

Lovely says it’s especially difficult for her Glades patients because many of them have to travel to the West Palm Beach area to get help.

“It’s harder for my clients for getting care. They have to travel and the gas and transportation costs add up, especially if they don’t have transportation,” she said.

“Then they have to find someone to take them to the Coast and that’s a problem when you have to travel 40 minutes. We only have one doctor who treats the adult patients and his wife treats the children with the disease. With all those patients, what’s the point in not having the doctors and the equipment to treat them?” Lovely says.

Shalonda Warren, CEO of the foundation, says the group needs more funding. “We don’t have enough case managers to have the kind of impact that we need. When you have a case manager, they can be your advocate. That’s why this organization needs funding and are in need of your help,” Warren said. “I am hopeful there continues to be forward progress.”

Meanwhile, Dameneka Afrika, 16, of Riviera Beach has a different set of challenges in coping with the disease. Dameneka is the poster child for the foundation and she says her greatest problem is keeping up with school work. Although she’s an A-B student in the International Baccalaureate program at Suncoast High School – a very prestigious program – she misses time from school one to two days a month to cope with the disease. Dameneka wants to become an accountant or a social worker and plans to attend Florida State University when she graduates from high school.

“I’m not there for those lessons, so I don’t know what’s being taught,” she says. “When I’m not there, I have to cram and study a lot harder than the other kids.” she said. That can add to her stress level, says her mother, Neete Afrika.

Dameneka, who’s on the drill and debate teams and in the photo club, says she doesn’t want sympathy. She says she loves speaking on behalf of the foundation, as she did on June 19, because others can learn from her strength and attitude.

“I like going around speaking because others learn something when I speak. Sickle cell doesn’t define me. I don’t ask for sympathy; I just ask for understanding.”