Real Stories from People Living with Sickle Cell Disease
Tasha Hines is 39 years old, married, and a registered nurse at an internal medicine outpatient clinic. She also has 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.
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.
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.
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.
“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.
Shantá and her husband Derek are the parents of three sons, two of whom have sickle beta thalassemia +, a type of sickle cell disease.
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.
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.
“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.
Living with sickle cell can be challenging and unpredictable, but I believe it makes us some of the strongest people on earth.
“When AJ was born in 1992, there was a real lack of information and education about newborn screening and sickle cell disease…”