Q&A / D. JEAN BRANNAN, president, Sickle Cell Foundation of Georgia: ‘More people with the sickle cell trait now understand it’

Tonight, “American Idol” winner Ruben Studdard will be in Atlanta to headline an evening of gospel music aimed at increasing awareness of sickle cell disease.

Studdard does not have the illness, but the Alabama native has toured major cities recently to help educate people about sickle cell and help secure more funding.

The free concert takes place at Greater Piney Grove Baptist Church and is being hosted by the Sickle Cell Foundation of Georgia.

D. Jean Brannan, president of the Sickle Cell Foundation of Georgia, chatted with the AJC about why the disease is so prevalent, yet often overlooked.

Q: What distinguishes the sickle cell trait from sickle cell disease?

A: When you have the sickle cell trait, you have inherited the sickle gene from one of your parents and the normal hemoglobin gene from the other. Sickle cell anemia occurs when you have received the sickle gene from both parents. People with sickle cell trait can go a lifetime and not know because there may be no health problems associated with it. All types of athletes have sickle cell and they’re not having any problems. Sickle cell disease affects every patient differently; no two patients are the same.

Q: What accomplishments or advancements have been made with the detection and treatment of the disease?

A: More people with the sickle cell trait now understand it. Some sickle cell anemia patients now qualify for bone marrow transplants, which requires a perfect match from a sibling. Researchers are also looking at stem cell transplants. New medications are also available that lessen the amount of pain a patient experiences during a crisis. When the Sickle Cell Foundation started in 1972, the average life expectancy was 18, and now it’s 45-plus.

Q: To what do you attribute the increase in life span?

A: We attribute that to the advancement of research and medicines. Sickle cell patients should know their limitations and be able to communicate with their doctors.

Q: What are some of the biggest challenges they face?

A: There are some patients who have blood transfusions on a regular basis and they can develop iron overload, a dangerous buildup of iron. This condition can lead to damage to the heart or liver. After receiving 10 or more transfusions, a patient should be checked for iron overload with a simple blood test called a serum ferritin test.

Q: Do people understand the disease?

A: In 2008, there are people who still don’t know much about sickle cell disease. Nobody had heard about the disease until the early 1970s when President Nixon signed the Sickle Cell Control Act into law. It enacted money to set up comprehensive centers around the country for the education, testing, treatment, research and support of sickle cell and patients. It also appropriated money for community-based organizations to educate, screen and counsel. Since then, funding has been cut and even the screening for a marriage license has stopped. We need more funding and awareness.

Q: Do celebrities such as Ruben Studdard help increase awareness?

A: We’ve had T-Boz from the group TLC as a spokesperson and Erik Coleman of the Atlanta Falcons as an advocate. Whoever speaks for sickle cell doesn’t matter. We just need that exposure, and we need people to know that sickle cell needs their support. We’re a political disease and not a glamorous disease with a bunch of celebrities championing our cause. We need people to stand up because there are a lot of people affected by this disease.

IN CONCERT

Be Sickle Smart

5-9 p.m. today. Free. Greater Piney Grove Baptist Church, 1879-1921 Glenwood Ave. S.E., Atlanta. 404-755-1641, www.sicklecellga.org.

QUICK FACTS

> More than 80,000 people in the United States have sickle cell disease.

> More than 5,000 people in Georgia have sickle cell disease.

> More than 140 infants are born each year in Georgia with sickle cell disease.

> One in 12 African- Americans has the sickle cell trait.

> Blood transfusions are an important part of treatment for many patients with sickle cell disease.

> Just 10 blood transfusions in a lifetime can lead to transfusional iron overload.

Source: Sickle Cell Foundation of Georgia