The charity’s origins
United Kingdom Thalassaemia Society (UKTS) is the national charity for people with thalassaemia and has been a registered charity for 43 years now. A while before it achieved charitable status, it was started by a group of parents who came together to lobby government, hospitals and specialists towards developing a structured treatment regime for their children with thalassaemia. At this time, parents were told their children would not live to become teenagers. The parents secured funding for the development of an iron chelator drug which would extend the lives of patients beyond their teenage years. Since then, the charity has developed considerably and is now the first point of contact for patients and health professionals for all things thalassaemia.
Thankfully, with medical advances, patient treatment and care has improved significantly and there are several patients who have reached 60 years of age. These older patients face a number of health issues however: intense bone pain, cardiac issues, pancreatic insufficiency, liver-related problems, severe fatigue, kidney problems and psychological issues. UKTS is working to develop and implement a framework of care solutions to improve the lives going forward for these patients.