Real Stories from People Living with Sickle Cell Disease
Tristan, along with being a professional model, actor, and independent fashion designer, is a professional patient advocate for the Sickle Cell Disease Association of America (SCDAA), the Sickle Cell Pennsylvania Sickle Cell Council, and Sick Cells.
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).
Phillip Okwo is a former summer camp counselor at Camp Crescent Moon, a week-long sleep away camp for children with sickle cell disease in Pacific Palisades, CA.
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).
“When I’m in that moment of pain in the emergency room, I can’t even think for myself. The pain is debilitating and they’re asking me questions like, ‘Are you sure you have sickle cell? We need to look into this,’” says Mimi, a 37-year-old lawyer and mom of four.
Rae Blaylark is the founder and Executive Director of the Sickle Cell Foundation of Minnesota.
Lance Jasper Jones is 31 years old, is engaged to be married, is in graduate school pursuing a master’s degree in clinical psychology, and is a talented musician and music producer. He is also living with 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.
“I knew there were a lot of things I could do to help myself stay healthy. I didn’t want to end up in the hospital and miss class,” said Mikeia Green about her experience managing sickle cell disease (SCD) in college.
“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).
“When AJ was born in 1992, there was a real lack of information and education about newborn screening and sickle cell disease…”