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美国国家公共电台 NPR After A Life Of Painful Sickle Cell Disease, A Patient Hopes Gene-Editing Can Help

时间:2019-10-14 02:01来源:互联网 提供网友:nan   字体: [ ]
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STEVE INSKEEP, HOST:

OK. The first person to get treated in one of the most closely watched medical experiments in decades is now waiting - waiting to learn if the treatment is working. NPR health correspondent Rob Stein introduced us to Victoria Gray this summer. And now he continues his exclusive look at her story.

(SOUNDBITE OF KNOCKING)

ROB STEIN, BYLINE1: Hi. Good to see you.

VICTORIA GRAY: Good to see you, too.

STEIN: I catch up with Victoria Gray in an apartment in Nashville near the hospital where she volunteered for the first attempt to use the revolutionary gene2-editing technique called CRISPR to treat a genetic3 disease in the United States.

Thank you so much for seeing us and letting us come over. I really appreciate it.

GRAY: No problem.

STEIN: Victoria's packing. She's finally going home tomorrow to see her four kids in Mississippi for the first time in months.

GRAY: I'm excited, you know. I'm very excited about it. I know it's going to be emotional for me. I miss the hugs and the kisses and - just everything.

STEIN: You must be so excited.

GRAY: Yes, I am (laughter). Yes, I am.

(SOUNDBITE OF ZIPPER4 UNZIPPING)

STEIN: She unzips a suitcase and starts pulling clothes from the closet.

GRAY: Oh, my goodness. Did I really bring all of this?

STEIN: Victoria has sickle5 cell disease, a terrible genetic disorder6 that turns her red blood cells into deformed7 sickle-shaped cells that clog8 her bloodstream, ravage9 her body and torture her with agonizing10 bouts11 of pain.

GRAY: The pain is excruciating. It's like being in a car accident and having lightning in your chest. It's pain that makes a grown woman like me scream.

STEIN: Oh, my God. That just sounds terrible.

GRAY: Yeah. It's a overwhelming pain.

STEIN: Like many sickle cell patients, Victoria had to drop out of school, quit work, spend weeks in the hospital away from her kids, worry whether she'll live to see them grow up.

GRAY: It's horrible.

STEIN: You have to live with that every day.

GRAY: Yes - knowing that I could have a stroke or a heart attack at any time because I have these cells in me that are misshapen. Who wouldn't worry?

STEIN: But now Victoria has hope because doctors infused billions of her own cells back into her body this summer, cells Victoria calls her...

GRAY: Super cells.

STEIN: ...Because scientists altered a gene in the cells with CRISPR, which makes rewriting DNA12 really easy, to hopefully give Victoria normal, healthy red blood cells.

GRAY: Super cells. Yes. Yes. They got to be super, do great things in my body, you know, and to help me be better, you know, and help me have more time with my kids and my family.

(SOUNDBITE OF ZIPPER ZIPPING)

GRAY: That's one.

STEIN: First suitcase done?

GRAY: Yes (laughter).

STEIN: But before Victoria can finish packing and go home, she has to stop by the TriStar Centennial Medical Center in Nashville again.

HAYDAR FRANGOUL: So how have you been doing?

GRAY: I'm doing good.

FRANGOUL: So, yeah, this is a big moment, friend.

GRAY: Yes.

STEIN: Dr. Haydar Frangoul at the Sarah Cannon13 Research Institute treated Victoria.

FRANGOUL: Are you excited about seeing the kids?

GRAY: Yes, I am.

FRANGOUL: Are they going to have a big welcome sign for you in Mississippi?

GRAY: No because it's a surprise.

FRANGOUL: Oh, you didn't tell them?

GRAY: No one knows I'm coming.

FRANGOUL: You did not tell them?

GRAY: No.

FRANGOUL: Oh, wow. So they don't know you are coming?

GRAY: No. No. No. I'm just going to show up tomorrow, like, Momma's home (laughter).

FRANGOUL: That's pretty good. OK. Let's check you out.

GRAY: OK.

FRANGOUL: Take a deep breath for me.

STEIN: Dr. Frangoul says Victoria will come back once a month for checkups and blood tests to see if her super cells are producing something called fetal hemoglobin.

FRANGOUL: We are very hopeful that this will work for Victoria, but we don't know that yet.

STEIN: So Victoria will also keep detailed14 diaries about her health, how much pain she's having, how much pain medication she needs, blood transfusions15.

FRANGOUL: Victoria is a pioneer in this. We are very excited. This is a big moment for Victoria and for this pivotal trial because if we can show that this therapy is safe and effective, it can potentially change the lives of many patients.

STEIN: Dr. Frangoul will also watch over Victoria for years to see if the treatment is preventing organ damage, heart attacks, strokes and other complications that takes the lives of sickle cell patients and for any signs of any side effects from the treatment.

FRANGOUL: My hope and dream for Victoria is to allow her to spend quality time with her family, go to the park with them, play with them without having to struggle with pain and weakness. I would love Victoria to be able to live a healthy, normal life. And she can see her - not only her children's graduation from high school but from colleges and getting married and having grandkids.

STEIN: Victoria hope so, too.

GRAY: Not just for me, but for other people, this would be mind-blowing. And, oh, my God, I can't imagine, you know, the lives that could be saved if this thing actually worked.

STEIN: That would be amazing.

GRAY: Yes, it would be.

(SOUNDBITE OF CURTAINS OPENING)

STEIN: Now it's time for the nurses to get some of Victoria's blood for the study she's in. It's being conducted by two biotech companies and will eventually involve dozens of patients in the United States, Canada and Europe.

UNIDENTIFIED PERSON: All right. So how many days have you been here?

GRAY: I think we're in, like, day 80.

UNIDENTIFIED PERSON: Oh, I can't believe you're really leaving.

STEIN: As nurses Bonnie Carroll and Brooke Ryan fill one big vial after another, I realize I never asked Victoria something.

Is it weird16 to have genetically-modified cells in your body?

GRAY: No. I'm just genetically-modified now (laughter). I'm a GMO. Is that what they call it?

STEIN: Finally the nurses are done. And it's time to say goodbye for now.

UNIDENTIFIED PERSON: Good job. You did it.

GRAY: Thank y'all. Y'all going to make me cry.

(LAUGHTER)

UNIDENTIFIED PERSON: No (laughter). You're fine.

STEIN: But before I say goodbye to Victoria, I asked her about what comes next - this limbo17 period, waiting to find out if her super cells are working.

GRAY: Well, I'm spiritual, Rob. And it's something I prayed about. And just the way everything happened for me, I just feel like it was fate for me to be here. I just believe that, you know, God is doing this for me. You know, that's all I can say. So yes, pray (laughter).

STEIN: Rob Stein, NPR News, Nashville.

(SOUNDBITE OF ARMS AND SLEEPERS' "WHEN THE BODY")


点击收听单词发音收听单词发音  

1 byline sSXyQ     
n.署名;v.署名
参考例句:
  • His byline was absent as well.他的署名也不见了。
  • We wish to thank the author of this article which carries no byline.我们要感谢这篇文章的那位没有署名的作者。
2 gene WgKxx     
n.遗传因子,基因
参考例句:
  • A single gene may have many effects.单一基因可能具有很多种效应。
  • The targeting of gene therapy has been paid close attention.其中基因治疗的靶向性是值得密切关注的问题之一。
3 genetic PgIxp     
adj.遗传的,遗传学的
参考例句:
  • It's very difficult to treat genetic diseases.遗传性疾病治疗起来很困难。
  • Each daughter cell can receive a full complement of the genetic information.每个子细胞可以收到遗传信息的一个完全补偿物。
4 zipper FevzVM     
n.拉链;v.拉上拉链
参考例句:
  • The zipper is red.这条拉链是红色的。
  • The zipper is a wonderful invention.拉链是个了不起的发明。
5 sickle eETzb     
n.镰刀
参考例句:
  • The gardener was swishing off the tops of weeds with a sickle.园丁正在用镰刀嗖嗖地割掉杂草的顶端。
  • There is a picture of the sickle on the flag. 旗帜上有镰刀的图案。
6 disorder Et1x4     
n.紊乱,混乱;骚动,骚乱;疾病,失调
参考例句:
  • When returning back,he discovered the room to be in disorder.回家后,他发现屋子里乱七八糟。
  • It contained a vast number of letters in great disorder.里面七零八落地装着许多信件。
7 deformed iutzwV     
adj.畸形的;变形的;丑的,破相了的
参考例句:
  • He was born with a deformed right leg.他出生时右腿畸形。
  • His body was deformed by leprosy.他的身体因为麻风病变形了。
8 clog 6qzz8     
vt.塞满,阻塞;n.[常pl.]木屐
参考例句:
  • In cotton and wool processing,short length fibers may clog sewers.在棉毛生产中,短纤维可能堵塞下水管道。
  • These streets often clog during the rush hour.这几条大街在交通高峰时间常常发生交通堵塞。
9 ravage iAYz9     
vt.使...荒废,破坏...;n.破坏,掠夺,荒废
参考例句:
  • Just in time to watch a plague ravage his village.恰好目睹了瘟疫毁灭了他的村庄。
  • For two decades the country has been ravaged by civil war and foreign intervention.20年来,这个国家一直被内战外侵所蹂躏。
10 agonizing PzXzcC     
adj.痛苦难忍的;使人苦恼的v.使极度痛苦;折磨(agonize的ing形式)
参考例句:
  • I spent days agonizing over whether to take the job or not. 我用了好些天苦苦思考是否接受这个工作。
  • his father's agonizing death 他父亲极度痛苦的死
11 bouts 2abe9936190c45115a3f6a38efb27c43     
n.拳击(或摔跤)比赛( bout的名词复数 );一段(工作);(尤指坏事的)一通;(疾病的)发作
参考例句:
  • For much of his life he suffered from recurrent bouts of depression. 他的大半辈子反复发作抑郁症。 来自《简明英汉词典》
  • It was one of fistiana's most famous championship bouts. 这是拳击界最有名的冠军赛之一。 来自《现代英汉综合大词典》
12 DNA 4u3z1l     
(缩)deoxyribonucleic acid 脱氧核糖核酸
参考例句:
  • DNA is stored in the nucleus of a cell.脱氧核糖核酸储存于细胞的细胞核里。
  • Gene mutations are alterations in the DNA code.基因突变是指DNA密码的改变。
13 cannon 3T8yc     
n.大炮,火炮;飞机上的机关炮
参考例句:
  • The soldiers fired the cannon.士兵们开炮。
  • The cannon thundered in the hills.大炮在山间轰鸣。
14 detailed xuNzms     
adj.详细的,详尽的,极注意细节的,完全的
参考例句:
  • He had made a detailed study of the terrain.他对地形作了缜密的研究。
  • A detailed list of our publications is available on request.我们的出版物有一份详细的目录备索。
15 transfusions 6bbc6e3b13bfaae7f9b1d36b8ce2c461     
n.输血( transfusion的名词复数 );输液;倾注;渗透
参考例句:
  • Still, transfusions have apparently never spread the disease, even among hemophiliacs. 还有,输血很明显从未传播过这种病,即使在血友病人之间也是如此。 来自英汉非文学 - 生命科学 - 口蹄疫疯牛病
  • Blood transfusions are a special, limited example of tissue transplantation. 输血是一个特殊的、有限制的组织移植的例子。 来自辞典例句
16 weird bghw8     
adj.古怪的,离奇的;怪诞的,神秘而可怕的
参考例句:
  • From his weird behaviour,he seems a bit of an oddity.从他不寻常的行为看来,他好像有点怪。
  • His weird clothes really gas me.他的怪衣裳简直笑死人。
17 limbo Z06xz     
n.地狱的边缘;监狱
参考例句:
  • His life seemed stuck in limbo and he could not go forward and he could not go back.他的生活好像陷入了不知所措的境地,进退两难。
  • I didn't know whether my family was alive or dead.I felt as if I was in limbo.我不知道家人是生是死,感觉自己茫然无措。
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TAG标签:   NPR  美国国家电台  英语听力
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