The first post-Covid pandemic holiday season is upon us, and for many, it marks a return to sharing moments with family and friends in person. But it's not all Secret Santa and Mariah Christmas specials when you have sickle cell disease, because the specter of a painful sickle cell crisis can cast a shadow over the revelry.
Sickle cell disease is a genetic blood disorder that causes hemoglobin to mutate, making red blood cells hard and sticky and changing the cell's shape to resemble the farm tool called a sickle. The disease most often affects the Afro-diasporic community whose ancestors came from sub-Saharan Africa. It also affects people from Saudi Arabia, India and Mediterranean countries such as Turkey, Greece and Italy.
The hemoglobin in red blood cells carries oxygen from the lungs to the rest of the body, so those with SCD suffer from a constant shortage of oxygen which causes fatigue and susceptibility to infection. It also causes episodes of severe pain, especially in the joints, abdomen, and limbs, which is called a sickle cell crisis.
Sickled cells die early and have a hard time passing through blood vessels, which clogs the blood flow, and can lead to acute chest syndrome (similar to pneumonia) and a stroke.
Unfortunately, the medical community has a historic bias in its approach to pain management and attributes a higher threshold of pain tolerance to Black people compared to White people and often prescribes insufficient pain medication for Afro-diasporic people in the throes of an SCD crisis.
Friends and family should learn the particular signs of an oncoming crisis when in the company of loved ones affected by SCD. It can go a long way in avoiding an emergency room visit during "The most wonderful time of the year."
Glenn (Elfer) Fletcher is a fifty-three-year-old visual artist born in Jamaica and raised in Flatbush, Brooklyn. He came of age in the golden era of Hip-Hop, airbrushing custom artwork on apparel and creating logos for recording artists. Glenn has fought a lifelong battle with sickle cell anemia, which has necessitated several medical procedures and surgeries.
And like many others with Sickle Cell, he has suffered and survived in silence.
It reached a breaking point when dental offices stopped accepting his insurance and the Covid-19 pandemic worsened the situation. So after urging and prodding from friends, Glenn started a fundraiser with The Smile Experiment, Inc to help pay for some dental care that his health insurance doesn't cover and to help with his chronic pain and bone issues.
"Stressful social conditions at a holiday dinner can be a trigger," Glenn says about the built-in trigger traps at festive get-togethers, such as people giving him the third degree and starting a debate about his diet, which is restrictive by necessity.
Mental and emotional stress triggers a decrease in microvascular blood flow, which is the first step toward a sickle cell crisis, so before you grill someone about why they passed up the meat quiche you brought to the potluck dinner, just let it go.
Tyrene Gibson is the author of Mothering The Crescent Moons, which details the challenges and triumphs of being a mother and a caregiver to a daughter with sickle cell anemia. Her daughter Aya was ultimately cured of SCD by a bone marrow transplant flown over from Germany, where Aya and Tyrene traveled to thank the donor in person.
Tyrene said that Aya spent several Christmas’ in the hospital fighting through Sickle Cell crises and that cold weather was a frequent trigger for Aya.
Additional triggers can be dehydration, lack of proper sleep, and overexertion. So a friendly game of pickup basketball in the backyard can end with an SCD crisis that leads to an emergency room visit.
A doctor can take vitals, draw blood to check hemoglobin levels, and prescribe medication to help manage the pain. With the documented bias in pain management, Afro-diasporic people should be diligent in communicating pain levels to doctors.
The best bet, however, for those with SCD is to avoid the emergency room altogether this holiday season, and that should be a group effort shared amongst friends and family.