Teenager with thalassemia starts college after gene editing treatment
A 16-year-old from Coventry with thalassemia has started college after a pioneering gene editing treatment at Birmingham Children's Hospital left her free of transfusions.
The Full Story
A plain summary built from the channels that reported this story.
A 16-year-old from Coventry with thalassemia says her life has been transformed after pioneering gene editing treatment. Vian was one of the first young people in the UK to receive the treatment last year. She had spent most of her life battling the inherited blood disorder and needed monthly blood transfusions. The treatment took place at Birmingham Children's Hospital last December. She has now been discharged from hospital and has started college, where she is studying health and social care and hopes to become a nurse.
The treatment is for people with thalassemia or sickle cell disease and is offered to young people at just three children's hospitals in the country. It involves collecting a patient's own stem cells and sending them to a manufacturing laboratory, where they are edited. The edit changes how the stem cells work and makes them produce more fetal or baby haemoglobin. In thalassemia, this allows patients to become transfusion-free. In sickle cell disease, it gives them a high baby haemoglobin level, which cancels out the problems caused by sickle haemoglobin. Doctors describe the result as a functional cure. The disease does not go away, but the aspects that cause problems are removed.
Vian said she now has energy and more options. She used to sleep and feel tired, and often had to sit out of PE, which she loves. She told another young patient, Joel Samuel, that the process can be hard, including the trauma, nurses and medicine, but that it is worth it. 'Imagine all the things you can do while being healthy again. I think you can do it. I did it, so can you,' she said.
Joel, 14, from Oldbury, is at the start of the same journey. His sickle cell disease leaves him in excruciating pain. His stem cells are being collected now and will be edited. In six months, he will have chemotherapy before the edited cells are returned to him. Vian's message to him was that the treatment could allow him to do things that take energy.
On screen
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Key Claims
Claims reported during this story's coverage, grouped by how many channels reported each one. Select a dot to see the source excerpt.
| Claim |  |
|---|---|
| Only on one channel | |
| A 16-year-old named Vian was among the first young people in the UK to receive gene editing treatment last year and has since recovered enough to start college. | |
| Doctors described the gene editing treatment as a functional cure that removes the problematic aspects of the disease, although the disease itself does not go away. | |
| The gene editing treatment is offered to young people at only three children's hospitals in the country. | |
Channel Perspectives
What each channel focused on, with key quotes.
BBC ONE West led with a local health story from Coventry and Birmingham. It focused on Vian's recovery, her college plans and her message to a younger patient, Joel Samuel. It also explained how the stem cell gene editing works and described the treatment as a functional cure.
- “My whole life is different now. It's changed so much.”
- “I have more options now. Like, before, I couldn't. Like, I couldn't do most things other kids could.”
- “Imagine all the things you can do while being healthy again. I think you can do it. I did it, so can you.”
Broadcast Timeline
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