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…

Thalassaemia was first described in Cyprus as early as 1946 by Fauedy.

to stick randomly on 50s-60s page

The oldest surviving Thalassaemics in the UK

are being born during this time

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.

A 3000 year old skeletonof a six-year old child, believed to have died

from Thalassaemia, wasdiscovered in Paphos,

Cyprus.

There are over 100 different mutations in the genetic

blueprint is known by scientists to cause

Thalassaemia.

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£8,000 was raised.

26 August 1980 ITVITV screened a TV play about Thalassaemia

titled One Chance In Four. One Chance In Four. The programme was later

loaned to Cyprus to be aired.

………………. and the funding goes on… . and the funding goes on…

1981 UKTS funded£7500£7500 research on growth and development of Thal patients£7570£7570 towards the operation of a cell separator At UCH£2000£2000 research on Heart Functions.£10,000£10,000 UCH Thalassaemic Laboratory for a year.1982 UKTS funded£5000£5000 to UCH for the continuation of the research into early antenatal diagnosis£7500£7500 to UCH for the research into oral iron chelator£7500£7500 further research into growth and development.

1983£13,000£13,000 to UCH for further research into growth and development.£12,250£12,250 to continuing research into the tablet form of iron chelators.1984£24,130£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£8,000 further funding into development of the oral chelator.

News Review Issue #1: Scientific Adviser’s Report:

Drinking TeaTea is good for Thalassaemia patients, according to doctors in the

Upstate Medical Centre in New York, USA.

27 May 1987 ITVITV aired an interview given by

Kotecha family, Katie and Olga to create awareness about

the problems of Thalassaemia and the emphasise for

The TabletThe Tablet.

Late 80s By now the fundraising bug was so

contagiousthere’s an event or some

sort in aid of Thalassaemia near enough

every other weekevery other week!

Late 80s Medical Lectureson Thalassaemia arebeing held MonthlyMonthly

at the society.

Late 80s to raise fundsUKTS started

selling sweatshirtswith 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 presentsIdeal for Christmas presentsat £8 (available in S, M, L and XL).

… phone the office … andplace 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 soeverything went sosmoothly it was “difficult to believe”.smoothly it was “difficult to believe”.

1980 The idea of Oral Oral ChelationChelation was floated.

In the 80s, it cost the NHS £3600 to treat

a thalassaemia major patient each year.

In the 80s new un-informed Thalassaemic

birthbirth was announced in the newsletter every 6 months6 months.

In the 80s There was a recreation area in the society office at

Nightingale Lane, n8. Keep fit classesKeep fit classes

were held every TuesdayTuesday for patients.

1987 Slogan “Inject Money

Into The Tablet ResearchThe Tablet Research,And Help Stop

The Desferal Injections.” P SotriouP Sotriou

UKTS Fund Raising OrganiserUKTS Fund Raising Organiser

1980sGraduations, Weddings,

New Births,were announced with great

pride and joyin News Review.

1980sUK Thalassaemia Society

Golden EraGolden Era

By the 90sWe are still strugglingwith using Desferal,

the ONLYONLY iron chelatorwidely available.

1991The idea of

a Super Transfusion CentreSuper Transfusion Centre was floated,

inspired by Thalassaemics having difficulty fitting their lives

around the treatments, andnot wanting to be treated

like a piece of furniture

Early 90sPatients struggle with

finding footing in the society, worried about having to tell

employers and potential partners of their condition.

“What is ThalassaemiaWhat is Thalassaemia”By Drs Vullo and Modellwas distributed by UKTSand permission from the authors were granted for

translation into many languages including Portugese, Turkish, Malay, Mandarin,

Greek, just to name a few.

UKTS contacted solicitorson patients behalf to investigatematters concerning NHS Blood

Transfusion Services negligence towards receiving and passing on

blood infected with Hep C.

Early 90sDespite ongoing awareness

and education exercisesvigorously carried out

by the volunteers, thereare still many peopleout there who doesnot know anything

about Thalassaemia.

Early 90sThalassaemics are still dying

from iron overload.

UKTS continues to leadUKTS continues to leadin dishing out in dishing out

““hot off the press”hot off the press”medical advancesmedical advances

and advices.and advices.

You Ask: What have You Ask: What have UK ThalassaemiaUK Thalassaemia

Society done for ME?Society done for ME?

In the early 80s, there were very few Thalassaemics who lived

beyond the age of 30. 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?

By the late 90sUK Thalassaemia Societywas operating very much

on Auto-PilotAuto-Pilot.

UKTS D&D returned to

Alexandra PalaceAfter 26 years.

2008To encourage junior doctors

to take an interestinterest in Thalassaemia

UKTS supports The Whittington Fellowship

in Thalassaemia.

UKTS PresidentsUKTS PresidentsMr U Dave 1967-1977Mr F Fellah 1977-1981Mr A Kyriacou 1982-1983

Mr F Papaiacovou 1983-1985Mr M Kotecha 1985-1990Dr N Lakhani 1990-2000Mr M Michael 2000-2010