Forty years ago, David Mack started counseling folks with sickle cell anemia in North Charleston.
The future state lawmaker from North Charleston had a degree in biology, a family history of community activism and a big heart. And what he learned working with the Committee on Better Racial Assurance nearly broke it.
Sickle cell disease is one of those genetic maladies for which there is no cure. Anyone who has it is in for a lifetime of pain and suffering.
Children sometimes have to take penicillin three times a day until they are 5 just to survive. Some adults need regular blood transfusions simply to function. Joint pain similar to arthritis is common. Strokes are a constant danger.
Anyone who has it can expect a shortened lifespan, although breakthroughs in medicine are helping people live longer and better.
Cobra, as the group would be known, opened in 1972 as the first federally funded nonprofit of its kind, helping people deal with sickle cell anemia and get the treatment they need. Since then, they have gained state funding to educate the public and help people afflicted with the disease.
There’s still a long way to go.
In honor of National Sickle Cell Awareness Month, Cobra is hosting its annual Sickle Cell Walk at 9 a.m. Sept. 23 at the North Charleston Recreation Department’s Park Circle facility.
It’s a good way to help out, and learn more about a deadly disease that is too often overlooked.
An alarming rate
South Carolina has one of the highest rates of sickle cell disease in the country. Researchers estimate there are about 4,500 folks with it in this state.
In a 2010 study, the Centers for Disease Control and Prevention found the sickle cell trait in one out of every 30 babies born here.
South Carolina sees an occurrence of sickle cell at about twice the national rate because so many people here are of African descent. Scientists believe the mutation started as an evolutionary defense against malaria.
Although it is most common among African-Americans, anyone can be born with sickle cell trait, particularly if their ancestry runs through Mediterranean countries.
This is not a communicable disease. It is genetic mutation that makes the hemoglobin in red blood cells form abnormally. This leads to frequent blood clots and sometimes cuts off the flow of oxygen to tissues and organs.
The Rev. Albertha Cook, executive director of Cobra, says her organization helps people with sickle cell understand the disease, learn how to manage it, deal with the symptoms and avoid flare-ups, which are called crises.
“Even though we have made advances that allow people to live until 60 or 70 with sickle cell, every crisis can be life-threatening,” Cook says.
This is more important with sickle cell than some other diseases because, in many cases, health care providers have not had much training in managing the disease.
Fortunately, MUSC runs a statewide network to improve education, treatment and keep folks in crisis out of the hospital as much as possible.
That’s a good thing because this isn’t going away anytime soon. There are more than 4 million people with sickle cell worldwide.
On a mission
Thirty years ago, Cobra and a handful of other people convinced the state to test babies for the sickle cell trait.
That has helped doctors better anticipate when symptoms might show up, and it also lets couples know the odds that their child will carry the disease. Cook says if two parents carry the gene but do not have symptoms, there is still a one in four chance their child will be born with sickle cell disease.
There is no cure for now, but medical advances are helping people and the research continues. That’s where the walk comes in. Cobra uses the money raised during the annual event — $20 for adults, $10 for children under 12 — to help their clients with treatment and donates the rest to research. Just as they have been doing for nearly half a century. For more information on the group, and the walk, go to cobraagency70.com.
Like Mack, Cook says the people involved with Cobra are on a mission.
“A lot of work is being done,” she says, “but so much more is needed.”