What is Beta Thalassaemia Major?

I was born with Beta Thalassaemia Major. My body does not produce enough healthy red blood cells. Thalassaemia Major is managed with regular blood transfusions. I go to hospital every three weeks to get a blood top up. That usually takes the whole working day. I usually go on Fridays, to have the weekend to recover if anything unexpected happens.

Thalassaemia is a hereditary genetic blood disorder. It is considered rare as less than 0.05% of the EU population has it. It is similar to Sickle Cell anaemia, but not quite. The difference is that the red blood cells are not sickle shaped, but not many healthy ones are produced. People with Thalassaemia Major do not get pain crises. The only noticeable side effect is a paler or slightly yellow skin colour. People with TM nowadays lead long healthy and happy lives. A lot of them are married and have children.

From the blood transfusions I get extra ferric iron (Fe3) which the body does not have a mechanism to excrete. In order to protect the internal organs from the excess ferric iron, I follow a chelation treatment with a water dispersible tablet after my two main meals. I also take a few other medications in the morning when I wake up.

Thalassaemia is very well managed, and people with Thalassaemia do not usually get many medical emergencies. They may feel more tired than able-bodied people though.

People with Thalassaemia are quite resilient as they had to live and manage such a complex medical condition from a very young age.

If you live or work with someone with Thalassaemia, please talk to them as to what their needs are and ask them to tell you how they experience their condition.