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Mid- 1960s - Some bright spark came up with the idea that if a patient could be kept

Mid- 1960s - Some bright spark came up with the idea that if a patient could be kept in a state of net negative iron balance for prolonged periods much of the iron damage might be reversed or stablised…. to stick randomly on 50s-60s page. Thalassaemia

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Mid- 1960s - Some bright spark came up with the idea that if a patient could be kept

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  1. Mid-1960s - Some bright spark came up with the idea that if a patient could be kept in a state of net negative iron balance for prolonged periods much of the iron damage might be reversed or stablised… to stick randomly on 50s-60s page Thalassaemia was first described in Cyprus as early as 1946 by Fauedy. The oldest surviving Thalassaemics in the UK are being born during this time A 3000 year old skeleton of a six-year old child, believed to have died from Thalassaemia, was discovered in Paphos, Cyprus. There are over 100 different mutations in the genetic blueprint is known by scientists to cause Thalassaemia. 1975 – another bright spark came up with the idea of giving Desferal by methods which would prolong its activity… Thus the small portable pump was developed. It was believed then that patients should be able to lead relatively normal lives and live a normal life span using this device. 70s 1976 UKTS began with 12 committee members, all PARENTS.

  2. 1980 The Great Hall at Alexandra Palace was burnt down. UKTS D&D that year originally booked for The Great Hall was moved to be held in The Palm Court instead. Tickets were sold at £6 each. £8,000 was raised. 26 August 1980 ITV screened a TV play about Thalassaemia titled One Chance In Four. The programme was later loaned to Cyprus to be aired. News Review Issue #1: Scientific Adviser’s Report: Drinking Tea is good for Thalassaemia patients, according to doctors in the Upstate Medical Centre in New York, USA. 1981 UKTS funded £7500 research on growth and development of Thal patients £7570 towards the operation of a cell separator At UCH £2000 research on Heart Functions. £10,000 UCH Thalassaemic Laboratory for a year. 1982 UKTS funded £5000 to UCH for the continuation of the research into early antenatal diagnosis £7500 to UCH for the research into oral iron chelator £7500 further research into growth and development. 1983 £13,000 to UCH for further research into growth and development. £12,250 to continuing research into the tablet form of iron chelators. 1984 £24,130 to continuing “development of the drug which may be given by mouth and have the same effect as Desferal”, Many groups of scientists around the world have been involved in the synthesis and screening of hundreds of chelators in order to replace Desferal with a CHEAP, orally active chelator. £8,000 further funding into development of the oral chelator. ………. and the funding goes on… 27 May 1987ITV aired an interview given by Kotecha family, Katie and Olga to create awareness about the problems of Thalassaemia and the emphasise for The Tablet. Late 80s By now the fundraising bug was so contagious there’s an event or some sort in aid of Thalassaemia near enough every other week!

  3. Late 80s Medical Lectures on Thalassaemia are being held Monthly at the society. Late 80s to raise funds UKTS started selling sweatshirts with the society’s logo at £8 each. We would love for anyone to send us pictures of Themselves or someone they know wearing that sweatshirt. In the 80s Thalassaemics could NOT get Life Insurance. Today, it is still DIFFICULT for Thalassaemics to get Life Insurance. News Review issue #39 “… Sweatshirts [with UKTS logo] for sale, Ideal for Christmas presents at £8 (available in S, M, L and XL). … phone the office … and place your orders now (Sept ’89). In 1980: Tickets for Fund Raising Social Evening were sold at £8 per adult, £4 per child (under 12). At one event in 1980, £10,000 was raised, according to the organisers, everything went so smoothly it was “difficult to believe”. 1980 The idea of Oral Chelation was floated.

  4. In the 80s new un-informed Thalassaemic birth was announced in the newsletter every 6 months. In the 80s, it cost the NHS £3600 to treat a thalassaemia major patient each year. In the 80s There was a recreation area in the society office at Nightingale Lane, n8. Keep fit classes were held every Tuesday for patients. 1987 Slogan “Inject Money Into The Tablet Research, And Help Stop The Desferal Injections.” P Sotriou UKTS Fund Raising Organiser 1980s Graduations, Weddings, New Births, were announced with great pride and joy in News Review.

  5. 1991 The idea of a Super Transfusion Centre was floated, inspired by Thalassaemics having difficulty fitting their lives around the treatments, and not wanting to be treated like a piece of furniture 1980s UK Thalassaemia Society Golden Era By the 90s We are still struggling with using Desferal, the ONLY iron chelator widely available. Early 90s Patients struggle with finding footing in the society, worried about having to tell employers and potential partners of their condition. “What is Thalassaemia” By Drs Vullo and Modell was distributed by UKTS and permission from the authors were granted for translation into many languages including Portugese, Turkish, Malay, Mandarin, Greek, just to name a few. UKTS contacted solicitors on patients behalf to investigate matters concerning NHS Blood Transfusion Services negligence towards receiving and passing on blood infected with Hep C.

  6. In the early 80s, there were very few Thalassaemics who lived beyond the age of 30. Therefore the question: Were the Thalassaemics who survived the 80s being a teenager a depressed/anguish lot as they were at the half way point of their life expectancy? Early 90s Despite ongoing awareness and education exercises vigorously carried out by the volunteers, there are still many people out there who does not know anything about Thalassaemia. UKTS continues to lead in dishing out “hot off the press” medical advances and advices. Early 90s Thalassaemics are still dying from iron overload. You Ask: What have UK Thalassaemia Society done for ME?

  7. By the late 90s UK Thalassaemia Society was operating very much on Auto-Pilot. 2008 To encourage junior doctors to take an interest in Thalassaemia UKTS supports The Whittington Fellowship in Thalassaemia. UKTS D&D returned to Alexandra Palace After 26 years.

  8. UKTS Presidents Mr U Dave 1967-1977 Mr F Fellah 1977-1981 Mr A Kyriacou 1982-1983 Mr F Papaiacovou 1983-1985 Mr M Kotecha 1985-1990 Dr N Lakhani 1990-2000 Mr M Michael 2000-2010

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