At UCLH you will have access to the latest treatments and technology and have a personal, individual care plan based around your needs. You will receive expert care from an experienced team in a safe and award winning environment.

Your treatment will be delivered within a number of comprehensive specialised services led by medical and nursing cancer care experts. This is enhanced further by support from a dedicated team of Clinical Nurse Specialists (CNS) who complement the medical team and oversee your treatment journey. They offer on-going support from diagnosis and treatment to investigations and outcomes. This includes telephone advice and support when you are at home.

Your treatment plan

Treatment for beta thalassaemia major (TDT) is a lifelong process that requires different specialists to manage the complications of the condition.

If you or your child is diagnosed with thalassaemia, they'll be referred to a specialist clinic so that they can be fully assessed.

A person with TDT can receive their first blood transfusion from as early as few weeks old, this will continue throughout their life. Every 2-4 weeks individuals are required to attend the hospital and received donated red blood cells.

People with TDT and NTDT are encouraged to attend the hospital regularly for monitoring. This includes blood testing and follow up with a number of different specialists. It is very time consuming and individuals can be required to attend numerous appointments every month.

Medications are given in order to remove the excess iron that is stored from blood transfusions. There are currently three types of iron chelation.

  1. Desferrioxamine (Desferal). Given as an infusion over 8-24 hours, normally 4-7 times a week. People taking desferrioxamine are required to self administer this medication via a small needle, usually into the stomach or thigh. As with any medication there are some associated side effects however, one of the most common side effects associated with desferrioxamine is the discomfort caused by the needle, perseverance is key with this treatment. In severe cases of iron overload intravenous desferrioxamine is sometimes necessary.
  2. Deferiprone (Ferriprox). This is a tablet, normally taken three times a day. Side effects can include nausea and vomiting. Some individuals will experience a reduction in their white blood cells with can affect their ability to fight infection. Blood tests are recommended every 7-10 days while taking deferiprone.

Deferasirox (Exjade). Deferasirox is an effervescent tablet usually taken once a day. Individuals often experience gastrointestinal side effects such as nausea and diarrhoea and so can have difficulty taking it. It can also affect a persons kidneys and so regular blood and urine tests need to be undertaken.

Thalassemia can have a huge impact on a person’s psychological wellbeing. It is a lifelong condition that makes regular hospital attendances mandatory. Thus it has a vast influence on every part of a person’s life from working or studying, to starting a family. It is important that individuals receive regular emotional and psychological support.

Please note: UCLH cannot guarantee the quality of the information or advice provided by outside organisations and charities.

UK Thalassaemia Society