My Teen has TED and I'm looking for help
Hello everyone,
My 16 year old daughter has been diagnosed with Graves disease and TED. Her left eye has a noticeable bulge compared to her right eye. The doctors believe she is past the active phase so we are trying to determine what to do next, surgery, medications etc.
She's been a trooper so far but recently her appearance is getting to her. She wants to "push her eye back in" and thinks she's "ugly." As a parent that breaks my heart.
My wife and I are looking for any advice we can get on how to handle this. There don't seem to be many teens with this disease. I'm trying to find a source for her to talk with other kids who also have the disease.
Thanks for any advice you may have!
Hi There
,
First, welcome to the ThyroidEyeDisease.net community. We hope that you will be able to find some support and comfort within this community. As I'm sure you are aware, thyroid eye disease can significantly impact so many aspects of life. I am sorry to hear your daughter is contending with Graves' and TED. It must not be easy for all of you.
We are not medical professionals and cannot give medical advice, but we can offer some resources that you may find helpful. I will link some informational articles below.
Also, we have articles written by Health Leaders who have first-hand experience with TED. You may find some of their articles encouraging, relatable, and validating as you go through this journey with your daughter.
Hopefully, these articles can help you, but I also hope some of our community members will chime in with their lived experiences and/or advice here in this forum or in others you join.
Phases of TED: https://thyroideyedisease.net/phases
Coping: https://thyroideyedisease.net/coping
Treatment: https://thyroideyedisease.net/treatment
Surgery: https://thyroideyedisease.net/surgery
Health Leader Articles (Experiences- you can click on a profile, scroll to the bottom, and click on Read more articles to see their list of articles):
https://thyroideyedisease.net/community-advocates
Two perspectives on surgery:
https://thyroideyedisease.net/living/did-not-get-surgery
https://thyroideyedisease.net/living/positive-view-on-surgery
Specifically about change of appearance:
https://thyroideyedisease.net/living/who-is-that-photos
https://thyroideyedisease.net/living/stranger-in-mirror
We are here to support you! Please keep us updated, and let us know if there is any specific information we can help you find!
All the best, Torie (TED Team Member)
