CDC to host sickle cell disease symposium



NDDH SICKLE CELL 9/11/09 Friday

Suggested headline: CDC to host sickle cell disease symposium

By Johnny Jackson


In recognition of Sickle Cell Awareness Month, officials with the Centers for Disease Control and Prevention (CDC) plan to host a symposium on the disease.

The "Face of Sickle Cell Disease" will highlight the first-hand experiences of those stricken with sickle cell, and provide insight on the latest research on the condition, said Melissa Creary, a health scientist with the CDC.

"It's going to appeal to the public health practitioners and doctors, but most importantly it's going to appeal to the community," Creary said.

The symposium will be held Sept. 21, from 5:30 to 8:30 p.m., at the CDC's Tom Harkin Global Communications Center, 1600 Clifton Road, Building 19, Auditorium A, in Atlanta.

Sickle cell disease is a chronic disease characterized by abnormally shaped red blood cells, Creary said. It is a genetic condition that's present at birth, and can be present as recessive genes in both parents.

Creary, who has sickle cell disease, said an estimated 70,000 to 100,000 people have been diagnosed with sickle cell disease nationwide.

"We actually think that's an under-estimate," she said. "It's also important to know that, while in the United States it's known as an African-American disease, but anyone could have sickle cell traits in their family."

Part of the function of this month's symposium is to build awareness of the disease, she continued, as some people may have the sickle cell trait and never know it.

Creary said people should be aware they have the trait as it could potentially be passed along to their children as a dominate gene.

"Awareness comes with getting as much information as possible," she added. "If you are thinking about having a child, I would try to find out if it is possible that you have sickle cell trait."

According to Creary, it is best to be tested for the disease at an early age.

"Because it's a rare disorder, not a lot of doctors know that much about the disease," she said. "But there's a lot to do in terms of treatment for babies and young people. Because I was diagnosed earlier, I have a milder case of the disease. Luckily for me, I don't have as many episodes."

Creary said those who suffer from the disease often have its signature symptom, chronic pain.

"Pain is a hallmark episode in sickle cell disease," she said. "This pain can start and stop at any time, and can be mild or severe and can last any length of time. Sickle cell disease is, however, a disease that can be managed. There are people living with the disease into their 50s and 60s."

Sickle cell disease patients and health professionals will be on hand during this month's symposium to discuss issues surrounding those affected by the disease and its treatments, she said.

Camara Jones, a public health expert on health disparities, is scheduled to discuss the latest research on the disease at the symposium.

Space for the symposium is limited. Those interested in learning more, or registering to attend, should contact Mary Hulihan by phone at (404) 498-6724, or e-mail mhulihan@cdc.gov.


On the net:

Centers for Disease Control and Prevention: www.cdc.gov

Sickle Cell Disease Association of America: www.sicklecelldisease.org