"I have Beta Thalassaemia Major which is a blood disorder that reduces the production of hemoglobin. Hemoglobin is the iron-containing protein in red blood cells that carries oxygen to cells throughout the body.
Every 3 weeks, I have to have a transfusion of 3 units of red blood cells which takes all day. Because of the excess blood, and the excess iron in the blood, I need to then have regular medication to get the iron out of my system. I was diagnosed pretty late, at 3 years old. My mum said I used to cry a lot when I was younger and there was never really a reason. I then started to get jaundiced and my eyes and skin started to go quite yellow. It was then that I was diagnosed.
Having this condition really affected me when I was younger. I used to take a lot of time off school for doctors appointments, hospital appointments, transfusions, blood tests and just through being tired in general. It really affected me academically and since then has caused issues with employment as I still need to take a day off for transfusions every three weeks. Not all employers are sympathetic or understand why it is essential.
Because of the transfusions it is recommended that I keep my iron intake low so I don’t eat too many foods that naturally are high in iron, like watermelon, spinach and broccoli. I have also been told that it might help to drink black tea when I eat meals as it reduces iron absorption.
In my family I’m the only one with the fully blown illness. I have 6 siblings and some of them do have a thalassaemia trait as both my parents are carriers. If both parents are carriers of Thalassaemia they have a 1 in 4 chance that their child will come out with Thalassaemia, 1 in 4 chance that their child will have nothing, no trait or not having the illness and then it’s 2 in 4 chance that their child or offspring will be carriers, so it’s quite a high percentage.
One of the hardest aspects of the condition for me is the tiredness. My back also sometimes throbs because of where the bone marrow is trying to produce more blood cells when I am due tor a transfusion. It really impacts on so many aspects because I am often too tired to socialise and that can really affect some of my relationships.
UKTS have given me a lot of support. Recently they had a conference and it was really great because there are other Thalassaemia sufferers at the event. It is really important to have that relationship, those connections with other people that have Thalassaemia, because it’s reassuring and you learn about the latest treatments.
Awareness is so important. I think this project that you’ve created is fantastic."
Thalassaemia is the name for a group of inherited conditions that affect a substance in the blood called haemoglobin. People with the condition produce either no or too little haemoglobin, which is used by red blood cells to carry oxygen around the body. This can make them very anaemic (tired, short of breath and pale).
It mainly affects people of Mediterranean, South Asian, Southeast Asian and Middle Eastern origin.
There are a number of types of thalassaemia, which can be divided into alpha and beta thalassaemias. Beta thalassaemia major is the most severe type. Other types include beta thalassaemia intermedia, alpha thalassaemia major and haemoglobin H disease.
It's also possible to be a "carrier" of thalassaemia, also known as having the thalassaemia trait. Thalassaemia carriers don't have any serious health problems themselves, but are at risk of having children with the condition.
For more information or support visit www.ukts.org.