BALTIMORE — Before the sun comes up David Dandridge is off getting his kids to school. He cherishes every minute because at any moment he could have a sickle cell crisis.
"It’s excruciating pain. It’s non-stop pain. You know how it feels when you sleep on your arm and you wake up in the morning and you're in pain. Imagine that pain times 100,” said Dandrige. a sickle cell warrior.
His health condition is more than a personal battle, all three of his kids have sickle cell disease.
"I was told I would not live past the age of 17, I'm 41. I would like to see my kids live long lives, healthy lives,” said Dandrige.
They have Hemogloblin SC, more of a mild form of sickle cell anemia. However, each of their cases are different. His daughter has seen far more hospital rooms than her brothers.
"It makes me wish I can take the pain from her. My fear is that this is something that is affecting my daughter, there's nothing I can do to help her,” said Dandrige.
A groundbreaking FDA approved treatment offers hope, a therapy that uses gene-editing technology.
"We're not calling it curative, because we don't know if it’s truly curative. There's some evidence that there's some red blood cells that are breaking down and there’s more to explore to try to understand it but we are calling it transformative. The number of painful events that people have afterwards has plummeted to zero for most people,” said Dr. Sophie Lanzkron, Director of Sickle Cell Center for Adults at Johns Hopkins Hospital.
As of now, the treatment only applies for sickle cell patients with more severe cases. But Dandrige is happy to see research move in the right direction. In 2014, he came dangerously close to never seeing his family again.
"I remember getting on the plane. That's all I can remember. Apparently, my body starting forming blood clots in my left foot,” said Dandrige.
The blood clots traveled to his spinal cord, chest and brain causing multiple strokes. He says he was told by his doctors it was the worst sickle cell crises they've ever seen.
"I couldn't drive, I couldn't walk, I couldn't work. I just bought a new house. I started asking questions like how am I supposed to pay my mortgage,” said Dandrige
After coming out of a coma and temporary losing his memory, Dandrige learned to walk again.
Outside of the new gene-editing treatment, the only cure for sickle cell is a bone marrow transplant which runs of the risk of being rejected on top of the difficulty of finding a matching donor. However, the gene therapy comes with a hefty price tag of over $2,000,000.
"Sickle cell primarily affects black people. There has been tons of structural racism that has limited access to high quality care. We are well behind the 8-ball compared to other disorders. There's a big push and a lot of recognition that insurance can't be the barrier that blocks people from getting this therapy,” said Lanzkron.
"With this new gene therapy, it gives me hopes. I have heard for many years, there's no cure for sickle cell,” said Dandrige.
