Thyroid Eye Disease Update – Surgery & Advocacy

Years after being diagnosed with Graves’ Disease and Thyroid Eye Disease, I can finally say I’m on the other side of my main set of surgeries – a total thyroidectomy, two orbital decompression procedures (one for each eye), and most recently an upper eye lid surgery.

I had originally hoped to complete these in winter of 2020/2021, but there were numerous pandemic-related delays which significantly impacted my life and mental health. I chose not to publicly disclose the dates of my surgeries. After cancellations, near cancellations, and delays, I’d only believe these procedures were happening once they were over.

I’m currently at home, resting, recovering, and looking forward to seeing the results once this curtain of bruising and swelling goes down. At that point, my doctor and I will be evaluating the results and noting any unresolved problems, in which case we’ll re-evaluate. But it’s an enormous relief to be on the other side of these.

In the meantime, I’m also happy to share that I’ve been invited to join the advocacy team at ThyroidEyeDisease.net!

This new resource features dozens of articles about symptoms, diagnosis, treatment, living with TED, mental health, talking with doctors, workplace/disability information, and more. There are also articles written by patient advocates and a heavily-moderated forum to connect with others in the community. I wish this resource had been available when I was first diagnosed and searching for answers.

I’ll be writing articles about living with Thyroid Eye Disease (my first two articles are already live on the site) as well as helping to moderate forums and discussions on social media.

Side note – my team leaders knew that my lid surgery was coming up, and they sent me these beautiful flowers the day before to wish me luck. Feeling grateful to be collaborating with such a kind and thoughtful team.

Visit ThyroidEyeDisease.net to learn more and connect with the community. Looking forward to seeing you there.