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A True Summer Experience for Children with Sickle Cell Disease

These kids, ages 6 to 15, are suffering from sickle cell disease, but you probably won't notice it. At Sickle Cell Summer Camp in North Carolina , they are too busy swimming, fishing, riding horses and doing arts and crafts.

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By Fia Curley

It may be contagious.

Children running wild, smiling very often and feeling unabashedly happy at all times.

Two young African American boys grinningThese kids, ages 6 to 15, are suffering from sickle cell disease, but you probably won't notice it. At Sickle Cell Summer Camp Exit Disclaimer in North Carolina , they are too busy swimming, fishing, riding horses and doing arts and crafts.

"Camp week is a time of ‘I can' not ‘I can't,'" said Kathy Norcott, assistant executive director of the Greensboro-based Piedmont Health Services and Sickle Cell Agency (PHSSCA). Exit Disclaimer

"At camp they're able to run and jump and participate in activities. They're able to impact each other by sharing the things they're able to do in their everyday lives. They're able to manage the condition instead of the condition managing them," Norcott said.

As Norcott puts it, the camp allows children to shift from limiting their activities to learning how to responsibly manage sickle cell disease and make it fit into their lives.

"Even though they have sickle cell disease, they're still normal kids," she said, adding that camp provides them time to talk about things any child might encounter.

"Most of the year, these kids are in and out of hospitals" said Donnell Coard, a former camper and one of this summer's 12 counselors. "This is the only week they have to be kids. It's just a wonderful feeling, not to worry about doctors or getting sick."

Sickle cell disease is a genetic disease passed on from parents to their children, which results in the malformation of red blood cells from their normal hole-less doughnut shapes to crescent shapes. The deformed blood cells sometimes have difficulty passing through the smaller blood vessels, blocking other blood cells from carrying oxygen to the body. In addition to sickle cell being painful, the lack of oxygen transmission can lead to swollen hands and feet, enlarged spleens or strokes. The most common type of the disease is sickle cell anemia.

Sickle cell disease is most common among people whose ancestors come from Africa; Mediterranean countries such as Greece, Turkey, and Italy; the Arabian Peninsula; India; and Spanish-speaking regions in South America, Central America, and parts of the Caribbean.

Affecting one in 500 hundred African Americans and one in a thousand Hispanics, sickle cell disease is the most common inherited blood disorder in the United States.

"Pain is the manifestation of blocked blood flow," said Dr. Betty S. Pace, chief medical officer for the Sickle Cell Disease Association of America, Inc. (SCDA), Exit Disclaimer and professor of molecular and cell biology at the University of Texas at Dallas . "The majority of individuals do ok, even if most people don't realize it. Individuals may have some mild pain, but they do ok."

Pace compares the pain felt by people with sickle cell disease to what occurs when a person sits on his or her leg for too long. Symptoms vary from person to person.

Bone marrow transplants can cure the disease, but it is only recommended in a minority of patients. This is mostly due to the high risk of the procedure – the drugs needed to make the transplant possible are highly toxic – and the difficulty in finding suitable donors. Also, bone marrow transplants are much more expensive than other treatments.

According to the SCDA, a person has a 100 percent chance of having sickle cell disease if one parent has it and the other does not. When one parent has sickle cell and the other has the trait, or gene for the disease, there is a 50 percent chance that their child will have the disease or trait. If both parents have the trait, their child has a 50 percent chance of having the disease.

In addition to a summer adventure away from home, Sickle Cell Summer Camp provides access to motivational speakers, college-age counselors who were once the first-timers, education on how sickle cell affects the body and the Med-Shed, a 24-hour medical clinic on camp grounds staffed by nurses.

Coard, now in his third summer as a counselor, said he was nervous when he first attended the camp at the age of 15. But through camp, the 20-year-old graphic arts student gained self esteem that he now passes on to his young group.

"I remember I was small and I wanted to do so many things and outside of camp, people just said ‘you can't, you can't,' but in camp I felt like I could do anything," he said.

The mantra is carried on throughout the camp. By the time the week is out, campers are used to making sure they take their medications on time. They used arts and crafts sessions to create motivational stones about future actions. They developed a network of friends from across the state they hope to see at camp next year.

They also attended health rap sessions to ask questions and talk about their experiences with sickle cell and how they handle the pain.

"If you don't understand your own disease, no one else is going to understand it," said Monica Summers, camp director and mother of a 4-year-old and 2-month-old with sickle cell disease. "It's the little things they can do to manage their sickle cell. You can never stop learning, especially about your condition."

According to Norcott, evaluations show that parents benefit because they learn to let their children have more independence. They see that their child's disease does not preclude normal childhood activities. Children benefit as their self esteem improves.

"Our camp lets kids know they can function like other children; they don't need to be pampered," said Karen Jordan, finance director for PHSSCA, who saw the camp created.

"We also try to empower them with information so that when they grow up they can ask their doctor questions," Jordan said.

"It came about because parents of children who have sickle cell disease are kind of overprotective," she said. "They're just children with a disease, not kids who can't function."

Sickle Cell Summer Camp is entering its 25 th year, and it has hit its 65-camper capacity for the last dozen years. Camp starts during the last week in July, with volunteer nurses assessing the latest batch of arrivals, filing away the required physical and immunization forms and fielding questions about medications.

"We're just trying to prepare these kids for the future," Jordan said. "We want them to know they do have a future."


Fia Curley is a writer for the OMHRC. Comments? E-mail:


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Content Last Modified: 9/10/2007 3:56:00 PM
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