ST. LOUIS — September is National Sickle Cell Awareness Month and this year’s theme “Sickle Cell Matters” is a rallying message for those spreading the word about the disease’s impact on the Black community.
Rosemary Britts, the Sickle Cell Association St. Louis executive director, says bringing awareness is essential in the effort to increase support and care for people with the disease.
According to Britts, there are approximately 100,000 individuals in the United States living with sickle cell disease (SCD) and another 2.5 million living with sickle cell trait.
While they may have heard of it, many Americans have no idea what sickle cell disease is and how devastating it can be.
SCD is a hereditary red blood cell disorder that restricts the way red blood cells move and carry oxygen throughout the body. Healthy red blood cells have hemoglobin, a protein in red blood cells that carries oxygen.
People with SCD have a hemoglobin type that does not carry oxygen as well. When this type of hemoglobin releases oxygen, it clumps together forming a stiff rod, which causes the red blood cell to become sickled, or banana-shaped.
Sickled red blood cells can block blood flow, keeping healthy red blood cells from carrying oxygen throughout the body. This can result in organs not receiving needed oxygen. People who have SCD can also suffer from anemia, resulting in severe fatigue.
Data from Sickle Cell Speaks shows People of African descent make up 90% of the population with sickle cell in the U.S., Sickle Cell Association St. Louis supports the sickle cell community through education and awareness. The organization provides support for hundreds of individuals and families.
“Our community health workers bring education and awareness to thousands through our annual Sickle Cell Stroll, Red Party, Blood Drives, virtual education sessions, and other awareness activities,” said Britts.
Britts says those suffering from SCD can have multiple health complications including severe pain, and some experience frequent hospitalization. Those who live in underserved areas don’t have proper care and treatment, which can lead to a reduced quality of life.
Dr. Allison King, a hematologist who works for the Department of Pediatrics, Division of Hematology and Oncology at Washington University St. Louis said, “SCD impacts every organ system, people with SCD are at higher risk for stroke, retinal changes, blood clots, lung and heart conditions, and gallstones.”
King says an SCD patient has a higher risk for infection because their spleen does not work like people without sickle cell disease.
She says it’s important for us to understand as a community that SCD patients and families need support because “the disease can be an invisible yet debilitating condition. Excellent medical care and compassion are needed to support those in need.
According to King, research shows that many people with SCD are members of communities of color. Unfortunately, those communities are more likely under-resourced.
“It is very challenging to live with an unpredictable and potentially life-threatening condition with few resources,” King said.
Challenges can include missing work due to severe pain and finding stable housing with functional utilities so that extreme weather shifts from hot to cold don’t trigger vaso-occlusive crises.
Catherine Hoyt, a pediatric occupational therapist who focuses on early childhood development among young children with SCD, says babies to toddlers can observe the impact the disease has on families.
Many of her patients are hospitalized for multiple days at a time, making it difficult for parents to maintain a job.
“Raising awareness about sickle cell awareness is so important because most healthcare providers are not aware of the impact it has on lives and how common it can be,” said Hoyt.
“We need to be thinking more about how we can best support the people in our communities to be able to do the things they need and want to do.”
Britts recommends those interested in knowing their trait status should take the hemoglobin electrophoresis test, the test can be done by a doctor or blood lab.
Ashley Winters is a Report for America reporter for the St. Louis American.