“The day to day can be very unpredictable because it’s an invisible illness. I can get pain at any time. Sometimes I might have plans and I might have to change those plans.”
This is from Stacey Sottile, a Sickle Cell “Warrior” who spoke with the AmNews about living with sickle cell disease. “I was only a baby [when I was diagnosed]. My parents were told when I was 11 months old and … they had never heard of sickle cell [disease]. I’m the youngest of seven kids and I’m the only one of their children to have sickle cell.”
September is National Sickle Cell Awareness Month, designated by Congress to bring awareness to the disease and those who live with it on a daily basis. The 2020 Presidential Proclamation from then-President Donald Trump states in part that “[a]s our Nation recognizes National Sickle Cell Disease Awareness Month, we do so with an unwavering commitment to a future in which people with the condition live fully, without pain and impediments, and ultimately experience a cure … A cure is within reach. [T]he Food and Drug Administration (FDA) has approved new treatments and more are on the horizon, and several initiatives are underway to make better use of all available tools in the battle against this disease.”
Sickle cell disease affects more than 100,000 Americans, primarily African Americans. One in 13 African-Americans carries the gene for sickle cell disease. About 1 in every 365 African-American babies is born with sickle cell disease. According to Dr. Karina Yazdanbakhsh, Ph.D., vice president and director of research at New York Blood Center Enterprises’ Lindsley F. Kimball Research Institute, in an interview with the AmNews, “Sickle cell is a genetic disorder that affects the red blood cells … What happens is those red cells become very rigid and they become very sticky, so … the red cells get stuck in the blood vessels and as a result, you have the blood flow not going properly, not getting to the organs like your brain, like your heart, like your kidneys, your lungs.”
What happens as a result? According to Yazdanbakhsh, “two things happen. One, your tissues, your organs are not getting enough oxygen that is carried by red [blood] cells, so they start not functioning properly. You [may] get organ failure down the line progressively … Number two, this blockage of the vessel is associated with debilitating pain, so these patients suffer from chronic pain and sometimes when there is a lot of blockage, they get acute pain [and] they have to go to the emergency room.”
Both Sottile and Yazdanbakhsh believed Sickle Cell Disease Awareness Month is a huge benefit. “It’s so important because … a lot of people still don’t know much about it and it affects [so many] people of African descent,” said Sottile. “[There are] a lot of disparities involved. In the world that we live in now, where you hear so much about [the] opioid crisis, when you show up in a hospital with a disease that if you’re not treated soon enough [with an] opioid, you might not make it out of the hospital.” Patients who are Black and in pain might not receive the treatment they need because medical facilities don’t understand sickle cell, she said.
Yazdanbakhsh also said the awareness month helps with understanding treatment and awareness of the physical pain these patients go through. “It’s so important to highlight that we need better treatments for these patients,” she said. “Right now, we don’t have that many compared to other diseases … but one of the goals of many of the treatments is to prevent [a] painful crisis.”
Sottile noted that her sickle cell condition means that “it may take me a little longer to accomplish things, but I always keep my eye on the task. Maybe at one moment, I can’t do what I wanted to do [or] accomplish, but I stick with it. As long as God gives me more time, I’m committed to accomplishing as many goals as I can while I’m here.”
To learn more about sickle cell disease and research, go to https://www.nybce.org/lindsley-f-kimball-research-institute/areas-of-research/sickle-cell-information-center/ Information from the Department of Health and Mental Hygiene is available at https://www.health.ny.gov/health_care/medicaid/fact_sheets/docs/sicklecell/english.pdf.