Name: Living with Sickle Cell Anemia
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Gene-edited babies could be free of sickle cell anemia. David Sanchez, a teen with the disease, shares his thoughts on living with sickle cell—and a possible future without it.

Sickle Cell Anemia is caused by a single change in the DNA sequence.

Living with Sickle Cell Anemia

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Gene-edited babies could be free of sickle cell anemia. David Sanchez, a teen with the disease, shares his thoughts on living with sickle cell—and a possible future without it.

Sickle Cell Anemia is caused by a single change in the DNA sequence.

Body & Brain

Living with Sickle Cell AnemiaPublished: September 16, 2020David Sanchez: Being in the hospital isn’t scary to me. Having a certain new problem isn’t scary to me anymore, ’cause it’s happened so many times. I don’t know. My blood just does not like me very much, I guess. Your red cells are supposed to be round and have oxygen in them. Mine are half-moon-shaped, sickle-shaped, which is why it’s called sickle cell, so I don’t get the same amount of oxygen.Nurse: I always say, like, oil change, you know? You’re draining the dirty out and then put a clean in. Yeah, so he just needs a tune-up every four to six weeks, yeah, uh-huh. Yeah.Dolores Sanchez: He used to tell me, “Don’t cry, Nonna. Why are you crying?” I said, you know, “Love you, baby.” He goes, “Don’t worry about it.” He says, “If I lose my life,” he goes, “you’ll see me again.” And I thought, “This child has more strength and faith than I do.”Matt Porteus: It’s often called the first molecular disease. It’s caused by a single change in the D.N.A. sequence.Onscreen: HBB GENEPorteus: It’s the letter A changed to a letter T.Producer: That’s it?Porteus: That’s it.Tshaka Cunningham: And that mutation causes a kink in the protein that prevents it from folding properly. If your folding structure of a protein is disrupted, now that protein can’t function.Dolores Sanchez: David can go from crazy teenager, joking, jumping around, to a fetal position on his knees.David Sanchez: It’s like pulsing. “This hurts. You’re having a sickle cell crisis.” I can have, like, a little pain crisis where it really doesn’t count, and then I can have something really bad. But I’m not just going to not play basketball. You can’t just not play basketball.Producer: Do you think you want to have kids?David Sanchez: I have too many siblings for that. The answer’s probably going to change, but for now, probably not, no. I’m not crazy.Producer: They’re saying maybe one day, with CRISPR, they could go in and change the gene in the embryo, so that the kid, when it’s born, doesn’t have sickle cell.David Sanchez: Hmm. I guess that’s kind of cool, that they’re thinking that it can do that in the future, but I think that would be up to the kid later.Producer: What do you mean?David Sanchez: There’s a lot of things that I learned having sickle cell, just because I had it. I learned patience with everyone. I learned just to be positive.Producer: So, you don’t wish that you never had it?David Sanchez: I don’t wish that I never had it, no. I don’t think I’d be me, if I didn’t have sickle cell.

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Living with Sickle Cell Anemia

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