The United Kingdom Thalassaemia Society celebrated their opening of the refurbished offices on the 2nd December 2018. Bambos Charalambous MP was present to cut the ribbon and declare the building open. He thanked the thalassaemia society board of directors and members for their work over the years in educating the public about the disorder, advocating for patients’ rights and supporting families and medical professionals in the field. He vowed to help support the society in its future work towards educating the public and improving treatment for patients living with thalassaemia.
In a brief statement, Romaine Maharaj Operations Manager of the UKTS, said “ beta thalassaemia major is an inherited blood disorder which affects the production of Haemoglobin, the oxygen carrying protein in the red blood cells. Patients with beta thalassaemia major either produce little or no haemoglobin which results in severe anaemia. As a result, children and adults with thalassaemia major require lifelong blood transfusions ranging from every 3-4 weeks, in order to stay alive.”
Thalassaemia mainly affects those coming from Northern Africa, the Mediterranean, the Middle East, Asia and South East Asia. In the UK, there is a vast number of thalassaemia patients within the Asian community.
It is important to note, that a child only inherits thalassaemia if both parents carry the thalassaemia gene or trait. In the UK, there are approximately 200,000 carriers of the thalassaemia gene. While being a carrier does not cause any major health problems, if two carriers have a baby, there is a 25% chance the baby could inherited the more serious form of the disorder; beta thalassaemia major.
Therefore, it is important to know whether the prospective mother and her partner carry the thalassaemia gene, before deciding to have a child.
Blood donation is also an important aspect in the lives of thalassaemia patients. Currently only 6% of the blood donated in England comes from the ethnic minority communities. Apart from regular blood donation being a health benefit to the donor, each unit of blood donated, saves up to three lives.
picture: (From Left to right):
Mr Bambos Charalambous MP, Romaine Maharaj (Ops Manager), Board Members: Anand Ghattaura, Gabriel Theophanous, Oddy Cooper, Ashkaan Bandoui. Administrator Katerina Read.