United Kingdom Thalassemia Society, St. Andrew the Apostle School

The School Council was visited by representatives of the United Kingdom Thalassaemia Society. The representatives, Romaine Maharaj and Cllr Stephanos Ioannou came to thank our students for raising money for their charity and to explain what the students needed to know about Thalassaemia. Below is an account of the visit from one of Year 7 students. “When we gave the Thalassaemia group their cheque we discussed all the issues with today’s society including how there aren’t enough people supporting charities that are trying to raise awareness. The representatives Romaine Maharaj and Cllr Stephanos Ioannou, were extremely pleased with the amount of money our school had raised and we agreed to do another event to support a different charity in the future.”

Mrs Oddy Cooper (Board Member UKTS), Mr Stephanos Ioannou( Councillor ) Mr Bambos Charalambous MP (Member of Parliament Southgate), Mrs Romaine Maharaj (Operations Manager UKTS), Mr Gabriel Theophanous (Chair UKTS), Dr Anne Yardumian (Consultant Haematologist)

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 Greek 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.

A full link to the article can be found here.