Brenda Green had no idea what sickle cell anemia was when her 13-year-old son Braden was diagnosed with it at 3 months.
After a newborn screening test determined he had the disease, she and her husband also learned they both carried traits that contributed to Braden's Sickle Cell Hemoglobin C disease diagnosis.
“It was a huge learning curve," she said.
The stressful process of the Greens educating themselves about sickle cell and seeking support and advice for the many health challenges Braden faced further inspired them to establish the B Strong Group. The South Carolina-based organization is dedicated to spreading awareness and stories about those living in the state with sickle cell.
The Medical University of South Carolina estimates as many as 4,500 people are living in the state with sickle cell. Worldwide, the number is around 3 million. The disease is caused by abnormal hemoglobin, a protein that is found in red blood cells.
This abnormality creates challenges for blood cells to carry oxygen throughout the body. That lack of oxygen can also misshape the cells or "sickle" them. This can cause them to become clumped in blood vessels and lead to organ injury and pain. The hemoglobin can also become fragile and create issues with inflammation and anemia.
Braden has had problems with infections and pneumonia throughout his life.
“That’s why everybody in our home gets the flu shot," Brenda Green said.
In 2015, he was also diagnosed with acute chest syndrome and required a lifesaving transfusion that same year. While being able to cover Braden's health care costs, Green said she struggled with finding support groups where she could talk about Braden's experience.
At the time, she said, she hadn't told a lot of people Braden was living with sickle cell disease.
"I finally said 'You know what, we have to get the stories out there,' " she said.
She created the B Strong Group as a way to tell those stories through building awareness and support where it it was lacking. Since its creation in 2017, the organization has hosted blood drives and special hospital visits for people with sickle cell.
One of the ultimate goals of the group has been to educate the public more about sickle cell. Green and others often find themselves explaining to people what the disease is. A lot of people assume they are faking when they complain about pain or inflammation as a result of the disease.
“It’s an invisible disability," said Kendra Macon, a board member with the B Strong Group and an Eastover resident.
In Macon's experience, she said people would sometimes even assume she was simply someone who was seeking drugs when she entered hospitals for help.
Ideally, she would like to see more young adults join the organization. The reason: When she made the transition from being under her parent's care with sickle cell, to being out on her own, there were a lot of things she had to learn.
She wants to mentor and network with other adult members to make sure people learn from each other's decisions. One lesson Macon learned is to not overdo it when it comes to blood transfusions. Her sister, who also had sickle cell, passed away from complications from overdoing transfusions.
“When you know better you do better," Macon said.
The B Strong Group is looking to host Braden's third annual birthday bash and blood drive in March in Eastover.
“My ultimate goal is to have everybody in South Carolina know something about sickle disease," Green said.