On Saturday 19 October 2019, United Kingdom Thalassaemia Society (UKTS) held its first-ever national thalassaemia day. The charity invited the general public to come into its Southgate office and have free testing (via a simple blood test) for thalassaemia, sickle cell trait and hepatitis C.

In addition to screening for these conditions, people were able to have fibroscans done to test their liver function. There were also nurses from NHS Blood and Transplant (NHSBT) conducting blood tests so that people could immediately find out what blood group they belonged to. The society was delighted that over 35 people registered on the day to become donors.

It was a hugely successful day with lots of people walking in to be tested. Also attending were: the Mayor of Enfield, Kate Analou; MP for Southgate, Bambos Charalambous; David Burrowes; four members of the Infected Blood Inquiry; and Samantha May from Hepatitis C Trust. Aside from the screening, it was a great opportunity to educate people about these conditions.

Before the testing began, UKTS Chair, Gabriel Theophanous, welcomed everyone and explained the different tests being offered. UKTS patron, Peter Polycarpou, then gave an important message: “Thalassaemia is a very serious disease but one that can be prevented by knowing your carrier status.

It is extremely important to find out before you think about having a baby. I urge you to be screened.

That would be an enormous help to you, your family and your offspring.” Peter was followed by fellow patron, Kypros Kyprianou, who explained how he came to be involved with the charity. He described how he met a bright, intelligent young woman at a party and was impressed by her positive outlook and personality. He then discovered she had thalassaemia and was bowled over by the intense and harsh treatment she had to endure in order to keep her alive.

That was UKTS voluntary staff member, Roanna Maharaj. Kypros said it was because of her that he had been inspired to join UKTS as a patron.

He spoke about UKTS and said: “You are great people doing great things. I’m proud to be a patron.”

UKTS is incredibly grateful to Kypros and the Theo Paphitis Charity for generously sponsoring the event. Gina Halwani then paid tribute to her late brother Costas Kountouras, a much-loved and inspirational thalassaemia patient. The date of the event had been set to honour the 10-year anniversary of his passing. Thalassaemia is a chronic blood disorder affecting the genes that are responsible for production of red blood cells. What this means is that patients with thalassaemia are dependent on regular blood transfusions throughout their lives. Without them, they would die in early childhood.

Thalassaemia developed as an evolutionary response to malaria which is why it mainly affects those coming from regions such as Asia and South East Asia, the Mediterranean, South America, the Caribbean, Northern and Central Africa and the Middle East.

Whilst it was initially prevalent in these regions, due to the migration of communities over the centuries, anyone can be at risk. In fact, 10,000 babies are born with thalassaemia every year.

This is why it is so important to be screened. In the UK, women are typically offered screening after they become pregnant despite it being available to everyone at any point in time. The blood test is usually done between 8-10 weeks. If the expectant mother has a positive result, the father of the baby is then screened.

This process can sometimes, despite the best efforts by the NHS team, take the pregnancy up to 16 weeks, at which point it may be too late. All it takes is a blood test to find out if you carry the gene. It’s better to be informed now so you can protect your unborn children, rather than when it is too late.

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