Real Stories from People Living with Sickle Cell Disease
“I test every Black woman for sickle cell, and I test every White woman for hemophilia.” That was what Vera’s doctor told her during an appointment when she was pregnant with her son, Joshua.
Tasha Hines is 39 years old, married, and a registered nurse at an internal medicine outpatient clinic. She also has sickle cell disease.
Alissia Cofer is a former camp director at Camp Cell-A-Bration, a free, week-long camp in Burton, TX, for children aged 6–14 with sickle cell disease (SCD).
Each year, Blaze Eppinger, who works for the Sickle Cell Foundation of Georgia and is a strong supporter of those living with sickle cell disease, works as both a camp registrar and camp counselor for Camp New Hope.
In September 2012, Lametra Scott gave birth to a baby boy. She named him Rickey. Before his birth, Lametra had no idea that she carried the sickle cell trait (SCT).
Aaron Nicole Washington is a student and also a motivational speaker who inspires audiences with her story of being the first successful nonmatched bone marrow transplant for sickle cell disease.
Rae Blaylark is the founder and Executive Director of the Sickle Cell Foundation of Minnesota.
Shantá and her husband Derek are the parents of three sons, two of whom have sickle beta thalassemia +, a type of sickle cell disease.
When both parents have sickle cell trait (SCT), there is a 1 in 4 chance that each of their children will have sickle cell disease (SCD). For Fatimah’s mother and father, who both have SCT, their first daughter (Fatimah’s older sister) was born with SCD; 7 years later, Fatimah was also born with SCD.
Dr. Alvarez directs the University’s Sickle Cell Program and leads the Newborn Screening Program for hemoglobinopathies in Miami-Dade and Monroe Counties in Florida.
“When you lose your child, it’s real. It’s been 5 years for me. People will tell you time will heal, but it doesn’t really heal. You just learn how to cope,” said Ritchie Johnson on the loss of her son, Chris, to a rare kidney cancer linked to sickle cell trait (SCT).
Living with sickle cell can be challenging and unpredictable, but I believe it makes us some of the strongest people on earth.