CLEVELAND — Danielle Lee lives large.
“I’ve been snorkeling. I’ve been ziplining. I wanted to go skydiving just to prove to myself that I could do it,” she told News 5. The aspiring actress dreams of being an action star. “I want to do stunts like Tom Cruise,” she said. “I think it’s so cool. I’m an adrenaline junkie.” She even left her home in Cleveland to try and make it big in Los Angeles. But there was one big setback to her dreams.
“I had no support system,” she said. “I would have to crawl to my car and take myself to the hospital.” That’s because Danielle has Sickle Cell Anemia.
June 19 is World Sickle Cell Day in recognition of the condition. It’s a genetic disease that contorts your blood cells into a sickle shape, so they get stuck together, causing severe pain. It can be triggered by certain conditions; being too cold, too dehydrated, not getting enough sleep, or even the change of the seasons. A sickle cell crisis in the wrong part of the body, like the heart or brain, can be deadly.
Dr. Rabi Hanna has been treating Danielle for 10 years.
“She was always living beyond [what] her body was able to allow her to do,” he said.
The disease affected every aspect of her life. She had to change colleges several times to get her degree.
“I would have an A in a class and the minute I’m in the hospital for like a week or two, now the classes like to fail me because they have an attendance policy,” she said. “It took me nine years to graduate.” In those nine years, she did not find the education system very forgiving of her life-long condition. “Teachers wouldn’t understand, and they would say, ‘Oh well, if you can’t be here, maybe you’re not cut out for college’ or ‘Maybe you should retake the class when you feel better.’”
It was Hanna who first told her about a clinical trial that might offer some hope. At first, Danielle wasn’t so sure.
“I was afraid that I would end up worse off than what it was because I know sickle cell. I know, you know, I kind of know the drill.” But with an action role in mind, she eventually got on board. Danielle’s doctors withdrew her stem cells, separating them into their component parts. Her DNA was shipped away to be rewritten by gene editing technology known as CRISPR. The new stem cells would tell her body to make healthy, round red blood cells, rather than cells that could “sickle.”
Danielle had plenty to do while waiting for her edited cells to return to her.
“I have to freeze my eggs because this can lead to infertility,” she said. This only child dreamed of a huge family, 6 to 8 kids, some of her own and some through adoption. So this was a crucial step for her.
She also had to have her remaining stem cells destroyed by chemotherapy to make room for the re-written cells to be put back into her body. Once they were in, they were left to do their work.
“You get the transfusion of cells and then you wait until the cells, the new cells, kind of establish from inside the bone marrow, and that takes about a month,” said Hanna.
Danielle was released from the hospital seven months ago. She says she still deals with some residual pain from the damage Sickle Cell already caused. It’s so minor she can treat it with Motrin. Since her treatment, she hasn’t had a pain crisis or needed to be hospitalized. Doctors will continue to monitor her. But she’s ready to dive back into living her life to its fullest.
“I’m itching to go skydiving,” she told us.
You can learn more about the clinical trial here.
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