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: j.l.hickey@btf-thyroid.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.

Thyroid Eye Disease Day - Saturday 1st December 2012

Session 1 (50 mins)

Session 2 (1 hour)

Session 3 (45 mins)

Session 4 (45 mins)

Session 5 (30 mins)

Thyroid Eye Disease Day - Saturday 1st December 2012

Daniel Ezra

Daniel Ezra is a Consultant Ophthalmologist at Moorfields Eye Hospital, specialising in oculoplastic, lacrimal and orbital disease. He is also the research lead for diseases affecting the eyelids and eye socket, and his major research interests include thyroid eye disease

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Geoff Rose

Geoff Rose is a Consultant Orbital, Lacrimal, Plastic and Reconstructive Surgeon at Moorfields Eye Hospital. He was appointed to the consultant staff in 1990, and originated the small-incision orbital decompression technique at Moorfields in 1992. He has published over two hundred papers and articles on a number of ocular diseases, including thyroid eye disease

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Colin Dayan

Colin Dayan is Professor of Clinical Diabetes, Endocrinology and Metabolism at Cardiff University Hospital, and Associated Editor of the Journal of Clinical Endocrinology and Metabolism. He has worked with the Thyroid Eye Disease Charitable Trust (TEDct) for over 10 years, and was chairman until 2009. He remains on the board of trustees, and is the Honorary Consultant Advisor

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Stan Newman

Stan Newman is Professor of Health Psychology, and Dean of the School of Health Sciences at City University. He specialises in the psychological and social impact of chronic physical illness and its treatment, with a particular focus on self-management. He is the principal investigator on the Whole Systems Demonstrator Project evaluating the role of assistive technologies in health and social care

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Maryse Bailly

Maryse Bailly obtained her PhD in cell biology from the University Claude Bernard Lyon I (France) in 1992. Following a postdoctoral at the Albert Einstein College of Medicine (New York) to study cell motility and the cytoskeleton, she joined the Institute of Ophthalmology in 2001. Her laboratory currently works on the mechanisms of cell-mediated contraction during fibrosis in the eye, which is implicated in thyroid eye disease

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Carol Lane

Carol Lane is a Consultant Orbital, Lacrimal, Plastic and Reconstructive Surgeon at the University Hospital of Wales, having trained at Moorfields Eye Hospital. She has run a specialist joint endocrinology/ophthalmology clinic for the management of thyroid eye disease for the last 18 years. She is a member of the European Group on Graves’ orbitopathy (EUGOGO)

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Rea Mattocks

Rea Mattocks was diagnosed with a rare, potentially blinding form of ocular inflammation called Birdshot Chorioretinopathy in 2006. When diagnosed there was little information or support available, which led her to co-found the Birdshot Chorioretinopathy Uveitis Society in 2009. In addition to supporting sufferers, the charity works to raise awareness to ensure early diagnosis, and to stimulate research

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Dolores Conroy

Dolores Conroy is the Director of Research at Fight for Sight and oversees the charity’s research programme. She received a PhD in Pharmacology in 1991. Following a postdoctoral training in Canada she joined Imperial College London in 1995 as a research lecturer in respiratory disease. She joined Fight for Sight in 2008

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Janis Hickey

Janis Hickey was diagnosed with Graves’ disease and thyroid eye disease in 1984, which led her to set up the British Thyroid Foundation (BTF) - now in its 21st year. The BTF provides support and reliable information to people with thyroid disorders and is involved in campaigns that strive to improve the patient experience

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Peter Foley

Peter Foley has been a horticulturalist all his life and developed hyperthyroidism and thyroid eye disease in 2001. He underwent bilateral 3-wall orbital decompression in 2003 and became a trustee of the BTF in 2004, a post he held for 6 years. He continues to work actively to promote the charity, and assists the helpline team

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Catey Bunce

Catey Bunce is the Principal Medical Statistician at Moorfields, and has been working in ophthalmic research for over 15 years. She is Co-Director of ACTIVE (the Applied Clinical Trials unit Investigating Vision and Eyes), the statistical editor of the academic journal ‘Eye’ and for the Cochrane Eyes and Vision Group. She holds honorary academic positions at the Institute of Ophthalmology, University College London and the London School of Hygiene and Tropical Medicine

Thyroid Eye Disease Day - Saturday 1st December 2012

NIHR Moorfields Biomedical Research Centre

"improving the health and wealth of the nation through research"
The goal of the National Institute for Health Research (NIHR) is to create a health research system in which the NHS supports outstanding individuals, working in world class facilities, conducting leading edge research focused on the needs of patients and the public.

Read more information.

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Moorfields Eye Hospital NHS Foundation Trust

Moorfields is one of the world’s leading eye hospitals, providing expertise in clinical care, research and teaching and education.

Our main focus is the treatment and care of NHS patients with a wide range of eye problems, from common complaints to rare conditions, which require treatments not available anywhere else in the UK.

For more information, please visit www.moorfields.nhs.uk/.

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UCl Institute of Ophthalmology

The UCL Institute of Ophthalmology is one of the foremost and most influential eye and vision research institutes in the world, enjoying an exceptional reputation for excellence in furthering understanding of the eye and visual system and its related disorders and diseases. It is at the cutting edge of translational research that delivers new therapies, diagnostic tools and preventive measures to patients suffering from visual impairment or blinding conditions.

The Institute is closely integrated with Moorfields Eye Hospital NHS Foundation Trust, demonstrating how focused academic research directed at key clinical problems can generate real and lasting benefit for patients. The hospital’s intense clinical activity combined with the Institute’s size and diversity gives a special and unique quality to the scale and potential of the partnership.

For more information, please visit www.ucl.ac.uk/ioo/

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Moorfields Eye Charity

Moorfields Eye Charity raises funds, above and beyond those normally provided by the NHS, to enable Moorfields Eye Hospital NHS Foundation Trust to continue to provide the highest quality care for its patients and their families and to help ensure it remains a world-class centre of excellence for ophthalmic research and education..

Charitable support has funded, and continues to fund, some significant projects. Recent examples include: building and equipping the largest children’s eye centre in the world; supporting research innovations in eye care; helping to tackle avoidable blindness across West Africa; developing a state-of-the-art stem cell research unit at the UCL Institute of Ophthalmology; equipping Moorfields new Research and Treatment Centre for Eyes and Vision to speed up the translation of research advances into clinical and surgical benefits for patients; and assisting in the development of an integrated support service to provide psychological and emotional support and professional counselling for Moorfields’ patients.

For more information, please visit www.moorfields.nhs.uk/eyecharity.

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The British Thyroid Foundation

The British Thyroid Foundation (BTF) helps people with thyroid disorders to avoid isolation and to gain information, support and understanding. The BTF works closely with the medical and health professions so that patients can be assured of reliable information. Just as importantly we are able to convey patient concerns to doctors.

For further information about our work and campaigns, please visit www.btf-thyroid.org.

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Thyroid Eye Disease Charitable Trust

If you suffer from thyroid eye disease TED CT is here to help you. We provide information, advice and support to those with this life changing disease. In addition we aim to raise the profile of this difficult, distressing and sometimes sight threatening disease not only amongst the general public but also within the medical profession.

For more information, please visit www.tedct.co.uk.