There’s local support for people with sickle cell disease in Columbus, but many people aren’t tapping into the resources.
I learned that during a recent interview with Lois Williams, president of the local Association of Sickle Cell Lower Chattahoochee Region.
I called Williams on Wednesday about a walk-a-thon that the organization is having on Saturday. I asked her how prevalent the disease is in community, and she wasn’t sure.
“We cannot get the sickle cell people in Columbus to come forward in large numbers to even answer that question,” she said. “Some say they don’t know we’re here, and so we’re gearing up to advertise more. But sometimes they don’t come to us because they don’t recognize that Columbus can treat sickle cell; so they go all the way to Atlanta.”
I found that interesting, so I called up Dr. Joseph Zanga, retired chief of pediatrics for Columbus Regional Health. During a recent interview, he had mentioned the prevalence of sickle cell in the community. So I asked him to elaborate.
Zanga said Dr. Paul LoDuca, a hematologist-oncologist, began setting up a sickle cell program at Columbus Children’s Hospital about three years ago. At that time, there were between 90 and 100 documented cases of children with sickle cell disease in Muscogee County schools, he said. But that’s just the tip of the iceberg.
“That means there had to be children coming through the pipeline from birth to 5 years of age also diagnosed with sickle cell disease,” Zanga further explained. “And indeed, Dr. LoDuca had a regular sickle cell practice and never had a session that didn’t have patients. Every week he was seeing children with sickle cell disease.”
Zanga said the numbers also don’t include children who may have dropped out of school due to complications from sickle cell. And there are some children whose families are unaware that they have the disease because their symptoms are less severe.
And, of course, the number doesn’t include all of the adults with the disease.
According to information on the Mayo Clinic website, sickle cell disease is an inherited group of disorders by which red blood cells contort into a sickle shape.
“The cells die early, leaving a shortage of healthy red blood cells (sickle cell anemia), and can block blood flow causing pain (sickle cell crisis),” according to the website. “Infections, pain and fatigue are symptoms of sickle cell disease. Treatments include medications, blood transfusions, and rarely a bone-marrow transplant.”
In the United States, most people with the disease are African American, according to the National Heart, Lung and Blood Institute. But there are also many people with this disease who come from Hispanic, southern European, Middle Eastern or Asian Indian ancestry.
“About 1 in 13 African-American babies is born with sickle cell trait,” according to information on the institute’s website. “About 1 in every 365 black children is born with sickle cell disease.”
Williams said the local Association of Sickle Cell was founded in 1995. The organization has a support group for people with sickle cell that averages about 50 members, she said. It also helps people with rent, food, clothing, transportation and their co-pay for medication.
The walk-a-thon will begin Saturday at Fourth Street Baptist Church, 222 Fifth St. Registration will begin at 8 a.m. and the walk at 9:30 a.m. There will be food, drinks, games, contests and free sickle cell testing.
“We can’t help them if we don’t know them,” Williams said of the need for more sickle cell patients to come forward. “They have to come to us and let us get them in our database so we can find out what their needs are.”
For more information about the Association of Sickle Cell go to www.sicklecellcolumbus.webs.com or search on Facebook for Sickle Cell LCR.