MU spreads word about sickle cell disease
September is National Sickle Cell Disease Awareness Month.
Sep. 18, 2012
Averaging about seven to eight micrometers in diameter, it might seem unfathomable misshapen red blood cells could detrimentally impact a person’s life.
But Alantra Neal is living proof they can.
“I have pains in my arms, legs, back and chest,” said Neal, a junior who attended the MU Children’s Hospital for treatment during one of her sickle cell crises. “When I have these pains, I become weak, and it makes it hard to pick things up or even walk.”
Alantra, along with the MU Children’s Hospital, is promoting a broad awareness of the disease.
“I feel like it’s not advertised that you can die from sickle cell,” Neal said. “Awareness of how to respond to the needs of someone with sickle cell is important to the ones that actually have to live with the disease.”
In honor of National Sickle Cell Disease Awareness Month, the Children’s Hospital is trying to inform Columbia about the blood disease.
“Awareness is key in managing sickle cell disease,” Elizabeth Gunier, a sickle cell care coordinator for the hospital’s Children’s Blood Disorders and Cancer Unit, said in an MU news release.
Their efforts include PSAs and a meet-and-greet that will link members of the community whose loved ones are afflicted by the disease.
“I’m trying to develop a community chain,” Gunier said.
The community chain would lend support, advice and expertise to members of the chain when sickle cell-related complications would occur, Gunier said.
MU Health Care is also discussing the formation of an adult sickle cell clinic, which would be headed by Praveen Garg, a clinical instructor at the School of Medicine.
A major duty of this clinic would be researching effective treatments for the adult population with this disease, Gunier said.
Part of the importance of sickle cell awareness is to accelerate research on the disease, Gunier said.
“Sickle cell disease has been around for 102 years now," Gunier said. "But the studies, medical discoveries and treatments have been relatively limited.”
Another important aspect of awareness is knowledge about trait status when starting a family, Gunier said.
When both parents have the sickle cell trait, there’s a 25 percent chance their child will have sickle cell disease, according to the news release. But when one parent is carrying the trait and the other has the disease, the odds increase to 50 percent they will pass the disorder onto their child.
In the news release, Gunier stressed the importance of parental knowledge of their child’s trait status.
“The most critical time is in the first few years of life, which is why prenatal care, early diagnosis and comprehensive treatment are so important,” said Gunier.
Contrary to popular belief, the disease does not only affect African-Americans, Gunier said.
“People think of it as being a black disease,” Gunier said. “That’s not necessarily true. Sickle cell disease is endemic in Saudi Arabia. It is of Mediterranean and Hispanic origins also. Caucasians can have it as well.”