SFEBES2012 Nurse Session Thyroid eye disease (3 abstracts)
Committee Member, TEDct, Bristol, United Kingdom.
At 39 I was diagnosed with Thyroid Eye Disease (TED) and commenced on Prednisolone by my Endocrinology team. There followed 18 months under my local Eye Hospital. I was started on Azathioprine. The Prednisolone was then gradually decreased to nil and then the Azathioprine decreased to nil. Now that my TED was inactive I transferred to Moorfields Eye Hospital (MEH). In 1 year I had bilateral lateral wall decompressions, bilateral upper lid surgery & bilateral lower lid surgery. I was lucky - I kept working during my treatment, but I had to reduce work place stressors. My employers had to put up with me taking time off for hospital appointments and weeks off post-operatively. I was also able to keep driving. I coped psychologically, but it wasnt easy. On top of the awful eye symptoms, hurtful phrases such as Are you pregnant? & cosmetic surgery dont help. People do not understand. Family, friends and Consultants at MEH helped get me through, but the Thyroid Eye Disease Charitable Trust (TEDct) really helped too - the information gained meant I was prepared for the various stages in my TED journey, but also the chance to meet fellow sufferers to share hope & advice was invaluable. Further surgery to remove an excess crease from my right upper lid occurred at MEH. My TED journey is now at an end, although I still have some residual features. However for patients just beginning their TED journey, my message to all nurses & doctors involved in their care is simple - while treating the physical side of this disease, dont forget the emotional side. Please give patients a TEDct leaflet - the patient will decide whether to join or not, but the support & advice that can be gained is immense.
Declaration of interest: Conflict of Interest: It is not a research project. I am a committee member of TEDct.
Funding: No specific grant from any funding agency in the public, commercial or not-for-profit sector.