On the June 24th 2019, Romaine Maharaj (Executive Director) Andrew Credgington (Operations Manager) and Roanna Maharaj (Patient Advocate) met with Counsellor Kate Anolue, Mayor of Enfield at the Mayors Parlour in Enfield.
The team at the UKTS did a short presentation about the society’s main aims and about the challenges facing people living with or affected by inherited blood condition; thalassaemia. The Mayor whose professional career was in nursing and midwifery for forty years at the North Middlesex Hospital, understood how important it was to educate the public about thalassaemia. As a result of the presentation, the Mayor decided to add the UKTS to one of her chosen charities.
She was surprised by how many communities were affected as thalassaemia is prevalent in the Caribbean, South America, Africa, the Middle East, the Mediterranean, Asia and South East Asian. Additionally, due to migration over centuries, the chronic condition which affects the production of haemoglobin (the oxygen carrying component) in red cells is now commonly seen in other parts of the World.
It is important to note, that a person only inherits the major form of the condition, if both parents carry the thalassaemia gene or trait. In the UK, there are approximately 300,000 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 inherit the more serious form of the disorder; beta thalassaemia major. Therefore, it is important to know whether you or your partner carries the thalassaemia gene or trait before you/ your partner become pregnant.
Patients with beta thalassaemia major either produce little or no haemoglobin which results in severe anaemia. As a result, children and adults with beta thalassaemia major require life-long blood transfusions ranging from every three to four weeks, in order to stay alive.
We look forward to working with the mayor!
