维安希望成为一名护士，因为她大半生都在医护人员的包围中度过乔安娜·里特尔 西米德兰兹健康记者2026年10月9日一名少女透露，得益于开创性的基因编辑技术，她的生活发生了翻天覆地的变化，这种技术逆转了致残性血液疾病的症状。
Vian hopes to become a nurse, having spent most of her life surrounded by medical staff Joanne Writtle West Midlands health correspondent 9 October 2026 A teenager has revealed how her life has been transformed thanks to pioneering gene editing, which reversed symptoms of a crippling blood disorder.
16岁的维安天生患有地中海贫血，这是一种影响血红蛋白的疾病——血红蛋白被红细胞用来在体内运输氧气。这让她气短、食欲不振。
Vian, 16, was born with thalassemia, a condition that affects haemoglobin - used by red blood cells to transport oxygen around the body. It left her short of breath and with no appetite.
她自己的干细胞经过编辑后，她不再需要忍受贯穿大半生的每月输血治疗。“我整个人生都变了。变化太大了，”她说。
Her own stem cells were edited and she no longer needs the monthly blood transfusions she endured for most of her life. "My whole life's different now. It's changed so much," she said.
这种针对地中海贫血或镰状细胞病患者的治疗，在全国三家儿童医院向年轻患者提供。来自考文垂的维安是首批接受该治疗的患者之一。
The treatment, for patients with thalassaemia or sickle cell disease, is offered to young people at three children's hospitals in the country. Vian, from Coventry, was one of the first to have it.
家庭 维安以前要在医院度过大量时间，整个童年都要每月输血 经过化疗后，她编辑过的干细胞于去年12月回输到她体内，她现已恢复良好。
Family Vian previously spent a lot of time in hospital and had to have monthly blood transfusions throughout her childhood Her edited stem cells were returned to her last December, following chemotherapy, and she has now recovered well.
“现在对我来说容易多了。我总是精力充沛，能做很多事，”维安解释道。
"It's much easier for me now. I always have energy to do stuff," Vian explained.
“我会说，‘妈妈咱们出去吧’。以前我只会睡觉，总是累。”她已开始在学院学习健康与社会护理，立志成为一名护士，因为她大半生都在医护人员的包围中度过。
"I'm like, ‘mum let's go out’. Before, I would just sleep, always tired." She has started studying health and social care at college, with ambitions of becoming a nurse, having spent most of her life surrounded by medical staff.
“现在我有更多选择了。以前，我做不了大多数其他孩子能做的事，”她补充道。
"I have more options now. Before, I couldn't do most things other kids could," she added.
“我通常只能旁观体育课。我非常喜欢体育课，但无法参与。” 基因编辑治疗改变少女人生的时刻 顾问血液学家莎拉·劳森博士将这种治疗描述为“功能性治愈”——疾病本身不会消失，但导致问题的方面被消除了。"我们采集干细胞，将其送往制造实验室进行编辑……这会改变干细胞的工作方式，使其产生更多胎儿或婴儿血红蛋白，"她说。"
"I usually sat out of PE. I really love PE, but I couldn't do that." Moment gene editing treatment transformed teens life Consultant haematologist Dr Sarah Lawson describes the treatment as a "functional cure" - the disease doesn't go away, but the aspects that caused problems are removed. "We collect the stem cells. They are sent off to a manufacturing laboratory where they are edited...and that changes how those stem cells work and it makes them produce more foetal or baby haemoglobin," she said.
对于地中海贫血患者，这意味着他们可以摆脱输血依赖；而对于镰状细胞病患者，这能使其胎儿血红蛋白水平升高，从而抵消镰状血红蛋白带来的问题。"我在读医学院时——那是很久以前了——记得学过一点基因疗法的知识，当时也曾讨论过。如今20多年过去，它竟成了现实，真是令人难以置信。" 莎拉·劳森医生表示，该疗法虽不能治愈疾病，但能让患者摆脱输血依赖。
"And in a patient with thalassaemia, that allows them to be transfusion free, and [in] a patient with sickle cell disease, it gives them a high baby haemoglobin level, which then negates the problems with the sickle haemoglobin. "When I was at medical school, which was a long time ago, I remember learning a little bit about gene therapy and it being talked about then. And for it now to be a reality 20-odd years later is incredible." Dr Sarah Lawson said the treatment did not cure the disease but allowed patients to be free of transfusions JoelSamuel, 14, from Oldbury, is at the start of his journey.
来自奥尔德伯里的14岁少年乔尔·塞缪尔正处于治疗旅程的起点。他的镰状细胞病让他饱受剧痛折磨。
His sickle cell disease leaves him in excruciating pain.
与地中海贫血一样，该病也涉及红细胞，通常是终身疾病，会影响患者关节，让他们感到虚弱疲惫。乔尔·塞缪尔的干细胞最近已在伯明翰儿童医院完成采集。
Like thalassemia, the disease also involves red blood cells and is usually a lifelong condition, affecting patients' joints and leaving them feeling weak and tired. JoelSamuel's stem cells have recently been collected at Birmingham Children's Hospital.
这些细胞将经过编辑，六个月后他将接受化疗，随后回输编辑后的细胞。
They will be edited and in six months he will have chemotherapy before his edited cells are returned to him.
他梦想着能享受运动。如今尝试运动只会让他生病。"我会累得不行，第二天就病倒了，无法去上学，"他说。
He dreams of being able to enjoy sport. Attempts to do that now make him ill. "I get tired and then the next day I get sick and I won't be able to go to school," he said.
他解释说，最初对治疗感到紧张，但也充满希望。"我觉得这能让我好起来，这样我就能去做那些消耗精力的事了，"他说。
He explained that he was initially nervous about having the treatment, but also feels hopeful. "I think it's good to make me better, so I can go and do stuff that takes my energy," he said.
乔尔·塞缪尔正开启基因编辑治疗之旅，以应对镰状细胞病带来的痛苦，该病已让他多次住院。乔尔·塞缪尔深受其苦。他的父母说，他们正祈祷治疗能帮助他。
JoelSamuel is starting his gene editing journey for the painful effects of sickle cell disease, which have meant many hospital admissions JoelSamuel has suffered a lot. His parents say they are praying the treatment will help him.
他的父亲阿尔弗雷德今年47岁，经营一家物流公司，他说：“有几位患者正在接受这种治疗，主要是地中海贫血患者，而不是镰状细胞贫血患者。所以我们希望能看到同样的疗效。“希望他以后也能踢足球。”
His father Alfred, who is 47 and runs a logistics company, said: "There are a few patients that have been on it, mainly with thalassemia instead of sickle cell. So we are hoping that we might get the same effects from it. "Hopefully he might be able to play football after all."
乔尔·塞缪尔的母亲朱丽叶特，一位41岁的女裁缝，说：“我迫不及待想看他做同龄人都能做的正常事情。” 乔尔·塞缪尔的父母朱丽叶特和阿尔弗雷德慎重考虑了他正在接受的治疗，并对维安已出院感到乐观。
JoelSamuel's mother Juliet, a 41-year-old seamstress, said: "I just can't wait to see him doing the normal things that everybody does at his age." JoelSamuel's parents Juliet and Alfred thought carefully about the treatment he is having, and feel optimistic Vian has now been discharged from hospital.
我们问她，在乔尔·塞缪尔治疗旅程开始时，是否有什么话想对他说。“想象一下，当你重获健康时，能做多少事情。
We asked her if she had a message for JoelSamuel at the start of his treatment journey. "Imagine all the things you can do while being healthy again.
“我觉得你能行，我做到了，你也可以。我知道这会非常艰难，创伤、护士、药物，一切都很难，但这值得。”
"I think you can do it, I did it and so can you. I know it's going to be really hard and the trauma and everything, the nurses, the medicine, everything, but it's worth it."