September is sickle cell awareness month and the People‘s AME Zion Church of Syracuse is  educating the community and raising  money for children affected by the disease. Upstate‘s Sharon Bauer RN gave a talk on sickle cell disease at the church on Sept. 3. (See below.)

The church also hosts its fourth annual Sickle Cell Awareness walkathon at 1 p.m. Saturday, Sept. 17 at the Wegman‘s playground at Onondaga Lake Park, Liverpool. This event has allowed the church to donate more than $5,000 to Upstate over the past three years.

At her talk Bauer said children with sickle cell were dying in their teens when she began her nursing career 30 years ago. “Now, thanks to medical advances and heightened awareness, they‘re living into their 50s.”

Every newborn is tested for sickle cell, and about 40 to 50 in Central New York each year are found to have the sickle cell trait or disease. They are referred to the Upstate Golisano Children‘s Hospital for care.

Sickle cell is an inherited genetic disease. Both parents must either have the sickle cell trait or disease for a baby to be born with sickle cell. People with sickle cell disease have red blood cells that are sickle-shaped and hard rather than soft and disc-shaped. The hard, misshapen cells block blood flow in veins and arteries, which leads to severe pain and tissue and organ damage.

A person with the sickle cell trait carries the gene for the disease, which means they do not have the disease but can pass it onto a child.

In the United States, sickle cell is found most often in people of African descent.

Bauer says people with sickle cell should keep hydrated. Fluid in the body allows blood to flow, and blood flow is crucial.  Sleep is also important, along with pain medication and antibiotics as needed, and folic acid, a vitamin that helps with the development of healthy red blood cells.

She says hot packs and temperature control can help mediate the pain. Avoid sudden changes in temperature, such as jumping into a cold pool on a hot day. This can cause a pain crisis because the temperature change causes blood vessels to constrict, making it even harder for healthy blood to pass through veins clogged with sickle cells. The resulting lack of oxygen to bones and organs causes pain and damage.

For more information

About the Center for Children‘s Cancer and Blood Disorders: http://www.upstate.edu/gch/services/cancerblood/

About the Upstate Golisano Children‘s Hospital: http://www.upstate.edu/gch/

To support Upstate‘s children‘s sickle cell disease fund: http://www.foundationforupstate.org/Page.aspx?pid=465