Patients will join leading medics for a special event in the North East to discuss a serious eye condition.
More than 50 European and UK experts in the field of thyroid eye disease (TED) will gather at the region’s Freeman Hospital for a unique two-day event next Friday and Saturday.
Newcastle is a Centre of Excellence for TED and respected clinicians, academics, scientists and patients will attend the event to discuss ways to ensure the needs of patients are met.
Dr Petros Perros, consultant endocrinologist at Newcastle’s Royal Victoria Infirmary, said: “This is the first time that patients and experts will come together as equal partners to look at the unmet needs of people with thyroid eye disease and explore areas of future research.
“It’s a unique opportunity for patients to find out about the latest advances in treatment and to be actively involved in discussions about their needs and future research.”
Medical students, patients’ families and carers, consultants, sixth form students interested in a career in medicine, nurse specialists, optometrists, scientists and members of the public are also being invited to take part.
Thyroid eye disease can cause protrusion of the eyes, double vision and, in some cases, blindness. Early diagnosis is important because treatments are most effective in the first stages of the disease.
Deborah Walsh, 52, a legal researcher of Corbridge, Northumberland, is one of around 70,000 patients in the UK affected by TED as she was diagnosed with the illness last year.
The mother-of-four, who will be attending the event, said: “I am very much looking forward to the event and it’s great that patients are being involved to put forward their ideas and views.
“The most important person with any medical condition is the patient and if there is no patient input then how do experts know what’s going on?
“I think I’m extremely lucky to live in the North East as I’m 150% convinced that I could not receive any better treatment as the care I receive is outstanding.”
Four patients will outline their experiences of living with TED and the audience will be invited to join one of three discussion groups to look at the causes and the most effective treatments.
More than 60 patients who have attended the Royal Victoria Infirmary in the past six months have been invited.
Dr Perros added: “This is a special event for many reasons and a North East initiative that we can be very proud of.
“We see patients from across the region and beyond, including Teesside, the Borders, Cumbria and even abroad. They and their families will play a very important part in this event so we want as many as possible to come along.”
Janis Hickey of the British Thyroid Foundation, Nancy Patterson, leader of the Graves’ Disease Patients Association in the USA, Beate Bartes, founder of a leading French patient-led organisation and secretary of Thyroid Federation International and representatives of the Thyroid Eye Disease Charitable Trust will be there. The two-day event is sponsored by the Society for Endocrinology, the European Thyroid Association, Tynesight Trust and the Biomedical Research Centre at Moorfields Hospital. Participants will be welcomed by Sir Leonard Fenwick, Chief Executive of the Newcastle Hospitals NHS Foundation Trust.
Places for the event are still available for the event. For more information email firstname.lastname@example.org or visit www.btf-thyroid.org.
Thyroid eye disease
- Thyroid eye disease is a condition that causes the soft tissue in the eye to become inflamed and swollen.
- It most commonly occurs in patients who have an overactive thyroid, but can also develop with an underactive thyroid gland.
- Thyroid eye disease can cause the eyes to be pushed forward and the eyes and eyelids to become swollen and red. In some cases there is swelling and stiffness of the muscles that move the eyes so the eyes are no longer in line with each other.
- Patients with the condition can suffer double vision. There are occasions when it can cause blindness from pressure on the nerve at the back of the eye or ulcers forming on the front of the eyes.
- Thyroid eye disease occurs when the body’s immune system attacks the back of the eye and causes inflammation.