Thalassaemia

What is thalassaemia?

If you have thalassemia, you have an abnormal type of haemoglobin – the protein in red blood cells that carries oxygen. This destroys more of your red blood cells than normal, leading to anaemia, which can cause fatigue, headaches and concentration problems. Sometimes it can cause more serious symptoms like shortness of breath. 

Thalassaemia is hereditary, meaning that the genes that cause it are passed on from your parents. Roughly 7% of people are thalassaemia carriers (also known as thalassaemia trait) but it’s only passed on to children if both parents are carriers.

If you need any more information on thalassaemia, you can visit the UK Thalassaemia Society website.

Thalassaemia facts

Name:                     Thalassaemia

Cell type:                Red blood cells

Frequency:             Roughly 250 babies are born in the UK with SCD / thalassaemia each year

UK transplants:     29 in 2016

Risk:                        Inherited from your parents

Treatment:              Blood transfusions and chelation therapy; stem cell transplants are considered in very rare situations

Other info:              Pregnant women are routinely offered screening to see if they are a carrier

Links:                      ukts.org

Thalassaemia and stem cell transplants

A stem cell transplant can help to treat some people with thalassaemia, especially children, although they are only performed very rarely.

If you’re a parent who is supporting a child through a transplant, please read our page for parents for more advice.

If a stem cell transplant is an option for you, it will likely be an allograft transplant – where your new stem cells are donated from an unrelated donor.