According to a story from MPR News, Rae Baylark, who is the founder and current president of the Sickle Cell Foundation of Minnesota, felt like she had nowhere to seek help when her son was diagnosed with the disease 22 years ago. Sickle cell anemia primarily affects people of African ancestry, and it was quite a rarity in the state in the 1990s. There were few places to go to receive specialized treatment. With the start of the foundation, Rae hoped to begin changing that problem.
About Sickle Cell Anemia
Sickle cell anemia, which is the most common and widespread form of sickle cell disease, in a heritable disorder of the blood. It is characterized by an abnormality in hemoglobin, the protein that transports oxygen in the blood cells. This abnormality causes the cells to become stiffened and sickle shaped. The disease can usually be identified within the first year of life, although severity of symptoms can vary. Such symptoms include chronic pain, stroke, anemia, bacterial infections, swelling in the hands and feet, and acute bouts of pain called “sickle cell crisis.” These crises can last for up to a week and can affect different areas of the body, or even cause organ damage. There are several treatments available, and bone marrow transplant can be curative when used in children. Life expectancy is 40 to 60 years. To learn more about sickle cell anemia, click here.
Still Behind the Curve
The work of Rae and others who have gotten involved in the foundation has led to the establishment of a sickle cell center for children with the disease in Minnesota. While this is a major achievement, there has also been a steady increase in adult cases as more people of African descent have begun to move to Minnesota. Other states in the Midwest still have more resources comparatively, such as clinics for adult patients and specialists that are dedicated to treating blood disorders like sickle cell anemia.
Unfortunately the lack of resources has led to unnecessary deaths, but since there is no patient registry in Minnesota, the precise number is uncertain. The University of Minnesota was planning to open an adult clinic, but the idea was shelved in 2014. Sickle cell receives significantly less attention from the medical community compared to other rare diseases that affect white people. Many black people who seek treatment also experience discrimination and skepticism from white physicians.
Regardless, Rae has been working with the Health Department in order to begin developing more infrastructure for treatment in Minnesota.
“We have to start by helping ourselves,” Rae says.
