Youths with sickle cell disease learn about illness

Shakeyma Irving watched the monitor as her blood pressure dropped from 131/73 to 113/58 in a matter of minutes.


"See how it came down?" said Dr. Vernon A. Barnes, an assistant professor at the Georgia Prevention Institute at Georgia Health Sciences University. "It's because you've been resting."

Shakeyma also is learning more about her sickle cell disease. The 14-year-old from the Batesburg-Leesville, S.C., area, is one of eight students taking part in the university's first summer day camp for children with sickle cell disease to learn more about it and research.

It is being billed as a science camp instead of just a camp for kids with a certain condition to take the emphasis off the disease, said Dr. Robert W. Gibson, associate professor in the Department of Occupational Therapy, who helped secure the grant to fund it from the National Institute on Minority Health and Health Disparities.

"One of the ways to address health disparities is to have patients be informed, to become leaders and advocates," Gibson said.

In fact, that's one of the things Shakeyma said she is hoping to get from the weeklong camp.

"To open my mouth more and be more communicative with people," she said.

In addition to learning more about their disease, her 16-year-old brother, Markell, said he is hoping to leave with "leadership skills, learning to work as a team and learning to get along with one another."

Those attributes will be helpful for these children as they get older and move from a pediatric setting, with one system of insurance coverage and rules, into a whole other health care system where their coverage might abruptly end at age 18 or 21, Gibson said.

In many of the childhood diseases that used to kill patients before they reached adulthood, such as sickle cell, modern medicine has now greatly improved their life span, he said, but the system has not adjusted.

"(It is) this idea of health care transition, how do we treat these children, how do we give them the skills to be able to work with providers and move through a system that is really not designed to treat them," Gibson said.

That children now might not even be aware that their disease used to snuff out life early is evidence of advancement, he said.

"I think that's a sign of the success," Gibson said.

What is it?

Sickle cell disease is caused by an abnormally shaped red blood cell that is more sticky and fragile than normal blood cells, which can sometimes create clots in small blood vessels. That can lead to pain and organ damage. It affects an estimated 100,000 people in the U.S. and is most prevalent in those of African, Central or South American, Caribbean or Mediterranean descent.