UKTS celebrates 44th anniversary!

On 1 March, United Kingdom Thalassaemia Society (UKTS) celebrated 44 years of being a registered charity. UKTS is the national charity for the genetic blood disorder, thalassaemia – supporting people living with the condition across the United Kingdom.

Romaine Maharaj, Executive Director of UKTS, said: “We are incredibly proud of the achievements the charity has made since its inception 44 years ago. But the real work started even before that, with a group of proactive parents of children with thalassaemia, coming together to lobby for better treatment for their children. Treatment has advanced spectacularly in the last 50 years and parents no longer receive the devastating message that their children could die in infancy. In fact, we now have people living with the condition in their early 60s! However, many of these older people have health issues such as diabetes, chronic bone pain and severe fatigue. We are currently collaborating with medical professionals to find ways to alleviate these issues and improve their quality of life. There are also some innovative new therapies being developed to treat thalassaemia, such as gene-editing and gene therapy. These are certainly exciting times in the thalassaemia world.”

To kickstart the activities for 2022, the charity has two upcoming events that anyone can get involved in. The first is the annual, global art and poetry competition which was initially launched two years ago, during the pandemic, as a way to alleviate boredom for children! It proved so popular that it was extended from being just for children to including people of all ages. It means that anyone anywhere in the world can enter. Last year, there were over 650 entries from 54 countries. This year the theme is: ‘A whole new world: a positive insight into our future’ and the competition runs until 22 May 2022. The artwork is a wonderful way to raise awareness about thalassaemia and the vital role of and desperate need for blood donation. It is sponsored by Silence Therapeutics and you can find out more about the art competition here

The second event in the UKTS diary is a 5k fun run on Sunday May 8 2022 in Grovelands Park in Southgate. You don’t have to be connected to the charity or thalassaemia to join in – all are welcome, it is free to enter and you can just turn up on the day. Hopefully the weather will be pleasant and there will be lots of enthusiastic runners of all ages! Full details of the fun run will be posted on the website and the charity’s social media channels.

The charity is hosting these events to raise awareness of thalassaemia and encourage people to get screened. As thalassaemia is prevalent among Greek communities, we urge everyone to get screened. Screening refers to the process of being tested to see if you carry the thalassaemia trait, which you can do unknowingly. All it takes is a simple blood test which you can ask your GP to arrange. By knowing your carrier status, you can ensure that your future children are not born with thalassaemia major.

Thalassaemia major is effectively a severe form of anaemia. It occurs when two people who are carriers of thalassaemia have a child; there is a 25% chance that each child they have will be born with beta thalassaemia major. As carriers, the parents will have no health issues, other than being slightly anaemic. However, it is a different story for any of their children if they are born with beta thalassaemia major. From a very young age, the child will need regular blood transfusions – often every three or four weeks. This is because they are unable to produce sufficient healthy haemoglobin in their blood cells. Without being transfused, they would die in early infancy. There are other health issues that people with beta thalassaemia major tend to be susceptible to, for example, diabetes, chronic fatigue and bone pain. Alongside the transfusions, people with beta thalassaemia major need to have chelation medication (orally or intravenously) to remove the excess iron that accumulates as a result of frequent blood transfusions. Chelation is a key part of the treatment because without it, the excess iron would be deposited in all the major organs, especially the heart and liver, eventually leading to organ failure.

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