Local events support Sickle Cell Awareness Month

by Dawn Baker

LIBERTY COUNTY, Ga. (WTOC) - September is Sickle Cell Awareness Month, and Tapestry Connections Incorporated is working to educate communities about the disease.

Brittany Carter, a member of the Tapestry Board and a pediatric nurse practitioner, said sickle cell is a family trait, and many people do not know their status.

“It wasn’t really screened until we started doing newborn screenings and making them required,” Carter said. “Now, technically, patients are still able to, parents are still able to decline a newborn screening. But that is where we figure out if a child has sickle cell trait, what type of sickle cell they have.”

Carter said sickle cell affects the shape of blood cells.

“You got to remember sickle cell, a lot of people think that when you say I have sickle cell, they don’t really know that there’s so many different complexes to sickle cell,” Carter said. “You have SS, you have SC. They also have what we call alpha-thalassemia. There’s just different traits when we get into how the shape of a cell works. And that also comes with it a lot of pain.”

Living with sickle cell

Ra’Andrea Rawls, who lives with sickle cell, said her symptoms started when she was one year old.

“When I was in first grade, I developed AVN, which is a vascular necrosis,” Rawls said. “It can happen in your hip or in your shoulders. And they told me I was never going to walk again.”

Rawls said she used a wheelchair in first and second grade before she was able to walk again.

“It bothered me because I had to be in a wheelchair for that number of years,” Rawls said. “You could see the other kids playing and doing all those different things. But me, I had to sit out for my health.”

Rawls said she deals with pain every day that can happen in her arms or legs, and that triggers can include weather and stress. She said many sickle cell patients have crises that lead to hospitalization in intensive care.

Rawls is now in college studying to become a nurse. She said her condition contributed to that career choice.

“I just want nurses and doctors to be more understanding of our condition, not to judge us,” Rawls said. “Because we didn’t choose to have sickle cell. Sickle cell chose us.”

Tapestry Connections’ mission

Dr. Deloris Mitchell, founder and executive director of Tapestry Connections Incorporated, said she started the organization after seeing family members living with sickle cell.

“With everything that Brittany has said and Ra’Andrea said, I’m there with resources to support them, to let them know that they’re seen, they’re valuable, they’re accountable, because a lot of the warriors are in college,” Mitchell said. “They’re in schools. They’re in high schools, elementary school. And they have careers. And the family is also important.”

Mitchell said the organization’s goal is to help sickle cell patients live well with the disease and have the best quality of life. Tapestry Connections provides resources and community awareness efforts in Liberty County and other communities.

Mitchell said the organization also conducts family planning discussions with patients starting at age 16, including conversations about sickle cell trait status.

Carter said there are multiple types of sickle cell, including SS, SC, sickle cell beta plus and sickle cell beta zero, and treatment depends on knowing which type a patient has.