I just wanted to publicly thank Ellen B. and the GDATF team for an awesome Boston support group meeting last week. Dr. Daniel R. Lefebvre, an ophthalmic plastic surgeon at Mass Eye & Ear, gave an amazing presentation on TED. As most of you know, I had moderate TED and ended up getting a bilateral orbital decompression in September 2012 and eyelid retraction repair in July 2013. So, I figured this was going to be a snoozefest for me. Wrong! I learned a little (mostly about how disgustingly huge the eye muscles become – and stay – with TED), but was just so intrigued by the way he explained TED. He made it very easy to understand, which I did not think was possible ever after three years of reading and hearing about it through firsthand experience.
Dr. Giuseppe Barbesino, an endocrinologist and codirector of the Endocrine Tumor Genetics Clinic at Mass General, was also there and gave the group his insight on RAI, selenium, and TED. He was trained in Italy and has published numerous articles. I could tell how patient-focused he is.
There were two other physicians there but I honestly don’t recall their names or specialties (hoping Ellen can chime in). Ellen, Dr. Wood, Dr. Lefebvre, and Dr. Barbesino made it a great experience.
Most patients asked questions. A few shared their experiences. I planned to remain silent and let people just started the Graves’ or TED journeys have the floor, but I had a question about long-term monitoring post-surgery for TED “survivors.” I prefaced it with the whole, “I had moderate TED, OD a year ago, eyelids two months ago” schpiel and literally heard gasps from around the room. At least five patients came up to me after the meeting to tell me how good my eyes looked. I was near tears. Sure, I know they look good compared to how they were when my TED was at its worst. But they’re not the same exact eyes I had before Graves’ and sometimes that makes me sad. My friends and family think I look great, but it honestly means the most when someone who has TED tells you that your recovery has given them hope.
I also talked to Dr. Lefebvre for a few minutes afterward, and he immediately complimented my surgeon’s work. When I told him it was performed out in western MA, he knew right away who my surgeon was. I was again reminded how blessed I was to have found my surgeon.
Thank you, thank you, thank you to Ellen and the team for putting together an excellent presentation and discussion. I know the couple I walked to the train with afterward is as eager for the next meeting as I am.
