Thyroid Eye Disease Day - Saturday 1st December 2012
A unique event was held in central London in December 2012. This was the first national ‘Thyroid Eye Disease (TED) day’, which brought together TED patients,
their relatives and carers and healthcare professionals. The central aim of the day was to enable all of the different participants to learn from each other’s
particular perspective of the disease. One hundred participants enjoyed the day at the Centre Point building on the doorstep of Oxford Street in central London.
This event was led by Mr. Daniel Ezra, Consultant Ophthalmologist at Moorfields specialising in Thyroid Eye Disease. The TED day was organised by the NIHR Moorfields
Biomedical Research Centre (BRC) in partnership with the British Thyroid Foundation and the Thyroid Eye Disease Charitable Trust (TEDct).
The day began with a ‘meet the experts’ session where world-leading researchers in TED gave an update of the research they are leading. This wide-ranging work
provoked discussion about exciting developments in: cell biology and investigations into the cause of the disease; clinical trials and how best to exploit the effectiveness
of new treatments; and psychological aspects including the impact of disfigurement that sometimes arises from TED. Participants had a rare opportunity to ask the
panel questions they had always wanted answered.
The next section was the ‘Patient Panel’. Five patients from around the UK shared their own moving experiences of living with TED, discussing the issues they have
been grappling with which ranged from impact on vision, ability to work, self-esteem and relationships. Many other participants then joined in and shared moving
experiences of their own.
The afternoon session focussed on how patients can make a difference and really set the research agenda. Speakers included Janis Hickey and Peter Foley from the British
Thyroid Foundation and Rea Mattocks of the Birdshot Uveitis Society who explained their own experiences setting up and running patient support groups.
The afternoon also hosted a focus group session where healthcare professionals, patients and carers were asked about research into TED. Important issues such as
research priorities, how research should be conducted and how to get patients involved were all discussed.
One of the most exciting highlights of the day was a proposal from Dolores Conroy, Director of Research at Fight for Sight. The proposal was to establish a £15,000 research fund specifically
for TED part-funded by Fight for Sight and part-funded by fundraising activities. The challenge set out was for £7,500 to be raised by patients, their carers and healthcare
professionals. The British Thyroid Foundation is currently exploring how this might be organised. Please contact Janis Hickey, Director of the British thyroid Foundation
if you are interested in any aspect of fundraising activities: firstname.lastname@example.org
Throughout the day, participants were able to vote on a range of issues in TED using the live voting wall. A ‘Voices for Vision’ room also provided an opportunity for participants to share their
thoughts and experiences on camera. A summary of all interactive activity will be appearing on this website shortly.