What is thalassaemia?
Thalassemia is a genetic blood disorder which means you have an abnormal type of haemoglobin.
Normally, haemoglobin carries oxygen within red blood cells around your body. But if you have thalassaemia, the abnormal haemoglobin destroys more red blood cells than it should, leading to anaemia.
Anaemia is a condition where you don’t have enough healthy red blood cells in your body. This can cause symptoms including:
- fatigue
- headaches
- concentration problems
- more serious issues, like shortness of breath.
How many people are diagnose with thalassaemia?
In England, around 50 people are diagnosed with thalassaemia every year.
Thalassaemia is more common in people from Asian, Middle Eastern and South Mediterranean backgrounds.
Thalassaemia can only be passed on to children genetically if both parents are carriers. If you are pregnant, doctors usually offer a routine screening for thalassaemia.
I had my transplant when I was five-years-old. Even 30 years later, I’ll sometimes see or smell something that will bring back memories. I had Beta Thalassaemia and the doctors said a bone marrow transplant would be the best option for a cure.
Sonal, who had a stem cell transplant to treat beta thalassaemia. You can read her story on our blog.
Treatments for thalassaemia
In many cases, doctors will try to use medication or blood transfusions to treat thalassaemia. You might have to get blood transfusions very regularly. Some people will also need iron chelation therapy, where doctors add a drug to your blood that is designed to ‘mop up’ and remove excess iron.
If no other treatments have helped, your doctors might offer:
- gene therapy
- allogeneic stem cell transplant, which means someone else donates their stem cells to you.
It’s quite rare for doctors to offer a stem cell transplant to adults – it’s more likely for children with thalassaemia. If you’re a parent supporting a child through a transplant, please find information and support on our page My child is having a transplant.
How many people have a stem cell transplant to treat thalassaemia?
There were 17 stem cell transplants in the UK to treat thalassaemia in 2023.
Where to find support for thalassaemia
Anthony Nolan supports people with all sorts of conditions that might use stem cells or cell therapies for treatment. But other organisations support people affected by specific blood disorders like thalassaemia.
To find out more about thalassaemia symptoms, diagnosis and treatments, you can visit:
To find advice and support for living with blood disorders like thalassaemia, you can visit:
