One hundred thousand Americans have sickle cell anemia. June 19 was World Sickle Cell Awareness Day, observed annually with the goal of increasing public knowledge and understanding of the condition.
Sickle cell disease is an inherited red blood cell disorder in which there aren’t enough healthy red blood cells to carry oxygen throughout the body, because the blood cells contort into a sickle shape, causing blocked blood flow and pain, known as sickle cell crisis.
When Valley Stream resident Solomon Richards, 20, thinks about Sickle Cell Awareness Day, he said, he is usually flooded with memories of his own experiences with sickle cell anemia, which he was diagnosed with at birth.
As a 6-year-old, on a trip to Jamaica, Richards nearly died of the disorder, when it flared up and caused his spleen to swell. He went into sickle cell crisis, which is extremely painful — he describes it as what he imagines being stuck with shards of glass all over his body would be like.
Solomon and his mother, Valley Stream resident Deborah Phillips, took a flight back to New York. When they arrived, Phillips said, she rushed her son to a hospital, where he received a blood transfusion that saved his life.
“It was a long time ago, so I don’t remember a lot of what happened,” Richards said, “but I just remember jumping into a cold pool, and then I started to feel as if sharp needles were sticking me all over my body. The hardest part about having sickle cell anemia is the fact that it isn’t a visual physical trauma, but it is an internal pain. No one can see the pain, but it still hurts a lot.”
Now, as a SUNY Buffalo junior computer science major, Richards said he has learned ways to better monitor his activities over the years to help prevent his disorder from causing him to go into crisis mode. He has learned about how extremes of hot or cold can cause a sickle cell emergency.
Cold can make the blood vessels in the skin, hands and feet narrow, which can make it more likely that the sickle- or crescent-shaped red blood cells will become stuck and stop oxygen from reaching the muscles and organs. “If I want to go out in the winter or do a snow activity like snowboarding,” Richards said, “I have to make sure that I’m wrapped up and wearing layers. And I have to stay very hydrated in hot temperatures to keep cool er. My mom always made me wear a wetsuit to do water activities after the incident in Jamaica, which was embarrassing. But I’m grateful to my mother, because she taught me a lot about how to care for my needs, and I’m able to wake up every day blessed, and do what I want to do.”
Richards said he was glad there is World Sickle Cell Awareness Day, because his disease is often misunderstood. “People who do not have sickle cell anemia will never fully understand what it’s like to have it,” he said, explaining how he must take prescribed folic acid and vitamin D tablets daily, and he always carries ibuprofen pills with him in case of a crisis.
And, he said, the coronavirus pandemic has not come without worry. “I was fearful and anxious … about the fact that any day, I could wake up and have Covid-19,” he said, “and that my already existing sickle cell anemia could possibly make it more fatal because I’m immunocompromised.”
Richards said that he isn’t sure how he would have made it through the past 16 months without his mother. He said she has always been encouraging, motivating him to stay healthy by eating nutritious food, working out, taking his medication and seeing his doctor when needed.
“Sickle cell anemia is a genetic disease that is passed down to children if both of their parents have the traits of the disease,” said Phillips, who has worked for blood banks for 20 years and has been the blood bank manager for South Shore University Hospital for the past six months, “but I didn’t know Solomon would have it, and I don’t blame myself for my son having sickle cell anemia. I think it’s very important that we have World Sickle Cell Awareness Day, because more of the African-American population has sickle cell anemia than any other race, and African-Americans with sickle cell anemia need more blood donations.”