Do you have Graves Opthalmopathy or Thyroid Eye Disease?
Thyroid Eye Disease is also called Graves Opthalmopathy. It involves an auto immune response which can cause the eyes to swell, redden, itch or tear up. Whichever name you choose to use, eye involvement is one of the most difficult aspects of thyroid illness to live with.
GO is an auto-immune condition which results in swelling around and under the eyelids. It can cause such a remarkably changed appearance that many patients find they become reluctant to go out or to socialise. Patients with eye disease have reported losing their jobs, their partners and their confidence. Worst of all, in the most serious cases, patients can find it difficult to read for very long or to drive long distances.
Many cope by wearing dark glasses or by only going out after dark. The good news is that in most cases, the disease is self limiting and many people find their eyes return to normal without treatment. There are a number of different treatment options and these are discussed verywell in a 2003 book by Elaine A Moore called Thyroid Eye Disease that everyone with eye disease should invest in.
There is quite a bit of thyroid Support available in Ireland now, but it is mostly online. And that can make it difficult to reach for people with eye problems or for those who are not very familiar with computers.
There are a quite few Facebook groups, many are set up by people with specific thyroid conditions like Hashimotos or Graves Disease and there is also Thyroid Cancer Support Group in Ireland which is run by Mary McGarry. Mary is a cancer survivor who trained as a counsellor and like myself, she is in contact with other thyroid patients around the globe.
This group (Thyroid Support Ireland) has been going for six years now and we have more than 300 members, most of whom are based in Ireland. So far we’ve only had two Face to Face (F2F) meetings, (both in Dublin) but many people have chatted through the site which allows patients to offer support and information to others with thyroid illnesses like Graves, Hashimotos and Hashitoxicosis.
Over the past six years, patients from right across Ireland and from all walks of life have come to TSI asking for information on doctors, medication and treatments. We don’t offer medical treatments or advice and we try to supply information from reputable published sources.
Thyroid Support Ireland or TSI is committed to patient empowerment through education and that is why we have put Amazon links on the TSI website, so that people can post reviews or buy books and share personal stories and opinions on living with thyroid illness here.
In 2016, I have noticed an increase in people seeking information on behalf of thyroid patients and at the same time I have been studying event management , to get ideas on how I might organise events that thyroid patients would make a real effort to attend.
I have been looking at ways that Thyroid Support Ireland could increase the support it offers through events and meetings and exploring how TSI can supply more of the kind of information that people want.
I was diagnosed with hyperthyroidism and Graves Disease IN 2007, and I’ve had two eye surgeries now, but I’ve been in remission, thankfully, since 2013, so I’ve been less focused on my illness and on updating the web site. Being busy studying has meant I’ve had less time to write articles.
However, just as my studies ended I was contacted by a senior social worker from the Eye & Ear Hospital who wanted to know what kind of thyroid support was available from other patients. I realised that although Thyroid Eye Disease, also known as TED is one of the most distressing aspects of thyroid illness, it is one I have written least about, so this article is an attempt to fill that gap.
Staff at the Eye & Ear hospital have recognised that there is a need for better patient support in Ireland and they are happy to meet patient to discuss how the hospital could help TSI to set up a support group for patients with eye disease.
So we are going to look at whether we can use the templates provided by the US- based Copeland Centre to help thyroid patients with eye disease to each construct their own Wellness Recovery Action Plans (WRAP). WRAP courses have been well established in Ireland 2009. The HSE has run many WRAP courses for people with mental health problems and it has been found particulrly helpful or people with addiction and issues around self esteem. It has also been used to help people with other chronic health conditions like arthritis and diabetes, though so far we have not found it being used by groups of thyroid paients. if you know of any information on this, or if you'd like to know more or take part in a WRAP Group , let us know.
Doing a WRAP course involves a commitment of 16 hours and the course usually takes place over a four or eight week period. Once patients have completed the course they are then in a much better position to offer support to others.
We have agreed to sit down and talk about how TSI can work with the Eye and Ear and we’d love to know what you think a WRAP course for thyroid patients should include.
What should we talk about – What would you like to get from a hospital-based support group – What kind of information could the hospital provided you with when you were first diagnosed and what advice could you offer to other patients?
Would you be prepared to help set up a support group to help others, or even to provide telephone support from home on one morning a week? So if youhave already done a WRAP course or you would like to take part in one being constructed just for people with thyroid illness, post a note here saying where you live and which days you would be freee to come to the eye and ear in Dublin.
Any ideas you have are very welcome.
All the Best, Shan