June 19 is World Sickle Cell Awareness Day. It’s observed each year with the goal to increase understanding of sickle cell disease, and the challenges facing patients, families and caregivers. Sickle cell disease is an inherited blood disorder that impacts every aspect of a person’s life. Throughout history, it’s long been misunderstood and medical professionals with Carilion say the disease has even come with some pretty unfair stigmas. Normally our blood cells are disc-shaped. In sickle cell disease, red blood cells become crescent or “sickle shaped” due to a genetic mutation. These sickled red blood cells do not move easily and can block blood flow to the rest of the body.
This often leads to organ damage, eye problems, infections and chronic pain among many other challenging lifelong symptoms.
Carilion Nurse practitioner Karen Marabale with the Carilion Sickle Cell Collaborative said sickle cell disease affects more than 100,000 people in the United States, and predominately impacts the black community.
About 1 in 13 black people are born with the sickle cell trait, and about 1 in every 365 black babies are born with sickle cell disease. She said part of the work the Sickle Cell Collaborative is doing is data collection, which has already proved groundbreaking in Virginia.
“This is known as a disease that affects African Americans. They have historically been neglected by society and the health care system. So, to finally bring light to this disease, it’s huge,” Marabale said. “I had a woman just this week who said oh my goodness when I was growing up I never told anyone I had sickle cell disease. It was known as bad blood.”
That misunderstanding is part of why Carilion created the sickle cell collaborative, thanks to grant funding from the Virginia Department of Health. Marabale hopes to reduce the stigma surrounding the disease, and support patients throughout their medical journey who have historically gone overlooked. The collaborative is focused on supporting patients in and outside of the hospital, and making sure no patients fall through the cracks.
Marabale said it’s crucial sickle cell patients have access to medical professionals including a primary care doctor, optometrist and dentist who understands the disease and how that care will impact the patient.
The sickle cell team acts as an advocate to each of their sickle cell patients, and uses social workers to make sure each patient can get the supporting care they need even when they leave the hospital.
For more information about the collaborative, click here.