This section includes more information about thalassaemia, including links to information leaflets made for patients and families. You will also find information about treatment options.

General information

Here you will find information about the condition and our general service information leaflets.

• What is thalassaemia
• NHS – thalassaemia
• About our service at UHBW
• Possible alpha thalassaemia
• HbH disease information leaflet (CAN)

Treatments

Supportive care

Blood transfusions are used in the management of people with transfusion dependent thalassaemia (thalassaemia major). These are usually given at regular intervals (for example, every 4 weeks). People with thalassaemia intermedia may need blood transfusions when they are unwell, or their body is under stress for example during pregnancy.

• UKTS – blood transfusion therapy
• NHS Blood & Transplant – about blood transfusion

Patients on regular blood transfusions will also likely need to be on medications called iron chelators which help to remove the extra iron in their body which comes from the blood transfusions.

• Desferrioxamine (iron chelation injection)

New and novel therapies

Stem cell transplant is a curative treatment for thalassaemia. Patients are required to have a sibling who is a full match to be considered for this treatment. A stem cell transplant is mainly performed in children, however since November 2023 this treatment is also available for adult patients.

• Anthony Nolan – stem cell transplant and thalassaemia

Gene therapy is a new treatment which has been approved in August 2024 for use in thalassaemia patients in the UK. It works to increase something called ‘fetal haemoglobin’, which is a type of baby haemoglobin. This haemoglobin helps the red cells be made more effectively and survive longer in the blood stream, which hopefully reduce the need for regular blood transfusion. There are currently strict criteria for the use of gene therapy in the UK – speak to your medical team if you would like to know more.

• UK Thalassaemia Society: Gene therapy explained

Pregnancy

Patients with thalassaemia should let their haemoglobinopathy/haematology team know if they are planning a pregnancy. This is important as the team can review their medications, medical history and blood results to ensure that their health is optimised going into the pregnancy. The team may also suggest a referral to a genetic counsellor depending on whether the father carries a thalassaemia gene or another unusual haemoglobin gene.

• Information for those at risk of having a baby with thalassaemia major
• Patient information – Beta thalassaemia and pregnancy
• South West Maternal Medicine Network – pregnancy advice for Parents & Families

If you feel that any information is missing from this page, please submit this via the ‘contact us’ page and we will endeavour to include your suggested additions in our next update.