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Child music prodigy 60 minutes3/16/2023 > jennelle stephenson: my body, it almost felt like it was, like, itching to do more. > lapook: tell me about the adjustment that you need to make, to go from the old you to the new you. > jennelle stephenson: thank you! > lapook: i have to say, i was a little nervous when you were thrown and you went down on the mat. and a fall like this would have landed her in the hospital. > lapook: remember, jennelle used to struggle just to walk up a flight of stairs. so, first thing you do is look and make sure it's that patient, go grab another one, make sure it's the same. when you're a scientist, you're skeptical all the time. was there ever a moment where you saw one of these normal- looking smears and thought, "is this the right patient?" > dr. > lapook: nine months later, this is what dr. this one in particular is shaped like a sickle. all across her blood you can see these really abnormal shapes. this is jennelle before any treatment? > dr. tisdale to notice something was happening. we can look back at the history of gene therapy and see there have been some tragedies. collins: make no mistake, we're talking about very cutting-edge research, where the certainty about all the outcomes is not entirely there. > lapook: there's really very little safety net here, right? > dr. and we really replace that with the gene that's misspelled in sickle cell disease, so that it transfers that instead of the infectious part. tisdale: the short answer is, we cut out the bits that cause infection in h.i.v. i can hear people, our viewers out there, thinking, "wait a second, how do you know you're not going to get aids from the h.i.v. will start producing healthy red blood cells. > lapook: if the process works, the stem cells with the correct d.n.a. and then, these cells will go back to the patient. tisdale: this virus will then find its way to one of those cells and drop off a copy or two of the correctly-spelled gene. in the laboratory, those cells are combined with the virus carrying that new d.n.a. i'm in so much pain, and you think i just want some morphine.Ĭell anemia. > jennelle stephenson: i just, sometimes i don't understand, i don't get it. > jennelle stephenson: and i'm looking up at her, and i'm in tears, and, i'm like, "i'm doing the best that i can." > lapook: and you've got to be thinking. > lapook: one of the most cruel parts of the disease, jennelle and other patients have told us, is being accused of faking pain to get narcotics, being labeled a "drug-seeker." during one trip to the emergency department, when she fell to the floor in pain, a doctor refused to help her. > jennelle stephenson: just basic things. > lapook: things that most people would take for granted. when i hit about 22, i was like, "you know, i'm- for a sickle celler, i'm kind of middle-aged right now." > lapook: what are some of the things that you've always wanted to do that you couldn't do? > jennelle stephenson: honestly, everybody laughs at me for this- i just want to run, to be honest. > lapook: did you think you would die early? > jennelle stephenson: i did, actually. > lapook: that you could potentially die early? > jennelle stephenson: right. > lapook: and you've known this your whole life, growing up? > jennelle stephenson: right. as an adult, she struggled through pain to complete college, but keeping a job was tough because something as simple as walking up stairs could trigger "a pain crisis." do you have friends who've died from sickle cell? > jennelle stephenson: i do. for jennelle, having the disease as a child often meant spending christmas in the hospital. glassberg: right on the bone there? > lapook: in the united states, it affects 100,000 people- mostly african americans. there, millions have the disease, and it's estimated more than 50% of babies born with it die before the age of five. the gene that causes sickle cell anemia evolved in places like sub-saharan africa, because it protects people from malaria. Prevents the normal delivery of oxygen throughout the body, leading to problems that include bone deterioration, strokes and organ failure. > lapook: the clear liquid in the bag contains jennelle's stem cells, that have been > jennelle stephenson: merry christmas to me. > lapook: she's one of a small group of patients to receive an infusion containing altered d.n.a. > lapook: it's the day after christmas, 2017, and 27-year-old jennelle stephenson has come with her father and brother from florida to the national institutes of health, just outside washington, d.c. for 15 months, we followed the scientists, and patients, who are ushering in a genetic revolution. As we first reported last year, a clinical trial at the national institutes of health is doing exactly that, in an attempt to cure sickle cell anemia- a devastating genetic disease that kills hundreds of thousands of people around the world every year.
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