Three Georgia sisters with sickle cell hopeful about experimental gene editing treatment
Trio of sisters battle sickle
It is a very painful and sometimes deadly blood disease and three sisters are working to battle it not only for themselves, but for others. An update on the trio of sisters known as sickle cell warriors.
HAMPTON, Ga. - When we caught up recently with the Tyler sisters ,17-year-old Amatullaah ,16-year-old Khadeejah, and 12-year-old Hajar, they were playing Chutes and Ladders.
Six years ago, it was Uno, when we met the three Hampton sisters all born with sickle cell disease.
About 100,000 Black Americans are living with the hereditary blood disorder.
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Khadeejah Tyler undergoes a blood transfusion at Children's Healthcare of Atlanta
Mapillar Dahn, the girls' mother, says sickle cell affects each of her daughters differently.
"For Amatullaah, when she has a pain crisis, and we have to go to the hospital, we're there for at least a week," Dahn says.
With sickle cell, the girls' normally round red blood cells, which carry oxygen to the body, become distorted and sickle-shaped, getting caught in their blood vessels, and blocking blood flow.
That can trigger complications like fatigue, infections, organ damage, and pain so severe Amatullaah says it can feel like breaking a bone.
"When it does happen, it's really bad, but it gets progressively worse," she says. "It's like it starts at 10, and then it goes up to 20 and 25."
Khadeejah has her own challenges.
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The Tyler sisters of Hampton, Georgia, are all living with sickle cell disease.
"Because she had a stroke when she was seven, she's had to have monthly blood transfusions," her mother says.
In the last eight years, Khadeejah has had at least ten surgeries, her mom adds.
Hajar's symptoms are primarily neurocognitive, with her anemia sometimes fogging her ability to focus in school.
Hajar was part of a clinical trial for a drug known as Oxbryta that her mom says is helping.
All three girls have grown up being a part of sickle cell research at Children's Healthcare of Atlanta, where they are all being treated.
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The Tyler sisters of Hampton, Georgia, are all living with sickle cell disease. (Mapillar Dahn)
"There hasn't been a lot of noise in the sickle cell space," Mapillar Dahn says. "We went for decades with just one drug on the market for sickle cell. And, if we don't participate in trials, then we are not progressing as a community."
That is why Dahn and her girls are carefully watching a new $17-million dollar study at UCSF Benioff Children's Hospital in Oakland, California, where researchers plan to use CRISPR-Cas9 gene-editing technology to pinpoint and correct the mutated gene that causes sickle cell.
Dr. Mark Walters, a professor of pediatrics at UCSF, and director of the blood and marrow transplant program at USCF Benioff Children's Hospital, says the goal is to identify a target sequence and modify it.
"In the case of sickle cell disease, which is caused by a point mutation, or a single change in the DNA code, that is responsible for this terrible disorder, we target that mutation, like a needle in a haystack and correct some of the mutations in some of the stem cells," Walters explains.
Right now, Dr. Mark Walters says, the only chance for a cure is for someone like one of the Tyler girls is to undergo a stem cell transplant.
But, to receive a transplant, patients need a healthy donor, usually a sibling, and Dr. Walters says most do not have a suitable match.
"So, the transformation that this therapy will present, if it's safe and effective, is that every person will have a donor because they act as their own donor," Dr. Walters explains. "We collect their own blood cells, modify them with the CRISPR gene editing tools and then return those cells back to their bodies, where many will no longer have sickle cell characteristics."
The gene-editing study is as four-year study that will involve nine volunteers with sickle cell disease, three of them teenagers.
Even if it ultimately proves safe and effective, Walters cautions, it could be another decade before the treatment is ready for primetime.
"If a person were 18 today, and got the treatment at 28, that would still have the potential to extend their life by 30 or more years," he says.
That gives the Tyler girls hope.
"It allows me to think, okay, I can keep going and eventually, I can try this, and it will work," Amatullaah Tyler smiles.
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