Thyroid Eye Disease (TED) Online Support Groups
Join a supportive and informative online community for individuals dealing with thyroid eye disease. TED Online Support Groups provide a safe space for you to participate in a conversation about what you and others are going through as each navigates the TED journey. These one hour, peer-facilitated, and topic driven online groups use Zoom to connect our global community. You can choose to have your camera off or on. Come as you are. And wear sunglasses if that works best for you. You can simply listen in or share according to your comfort level.
To attend a TED Online Support Group, please fill out the form below to be added to our email list. We will keep you informed about future meet ups.
Because we are a community and not medical professionals, it is important to follow the guidelines of TED Online Support Groups as outlined below – click the plus sign.
The above TED eyes drawing is by Roseanne and is part of the INSIDE OUT TED ART project.
TED Online Peer Support – Join the Conversation
Wednesday, April 16th @ 4:30pm PT / 5:30 MT / 6:30pm CT / 7:30pm ET
Friday, April 25th @ 12 Noon PT / 1pm MT / 2pm CT / 3pm ET
Please join us for a TED Community Peer Support Meet Up – a heartfelt, uplifting, and solution-oriented conversation about living with thyroid eye disease, TED.
Below are the topics for the midday and evening one-hour meetings that will take place on Zoom in April 2025. (International participants welcomed!)
You can be on or off camera. This is a safe space so make yourself comfortable!
Scroll down and use the red button to access the ZOOM log in credentials.
Have a topic you want to discuss? Let us know: hello@tedcommunity.org
TOPICS
Newly Diagnosed and Confused
When diagnosed with TED, there are normally a few options suggested by a physician, Dr. Google, or perhaps the members of an online social media group (Facebook or Reddit for example). Most familiar are: eye drops, steroids, wait & see, an FDA approved biologic, participation in clinical trials, and functional medicine. Let’s talk about the range of options and how to select the best option specific to you. (Cynthia)
When TED Flares
A thyroid eye disease (TED) flare refers to a sudden worsening or reactivation of inflammation and symptoms related to TED. These flares can occur even after a period of stability or improvement and often bring back—or intensify—eye-related symptoms. We’ll look at some of the things that might set off a flare. And what to do if you have a TED Flare. We have a symptom tracker and questions to ask your physician if you suspect you are having a TED flare.
Navigating Day to Day Life, with TED
Thyroid eye disease is a disrupter of daily life. Things that were at one time quite easy may have become cumbersome or even impossible due to TED. Many of us have modified our behavior while seeking treatment for TED. For example, avoiding mirrors, bright lights, social gatherings … never making eye contact, staying indoors, winking constantly to avoid seeing two of everything! How has TED changed your life?
The Financial Burden of TED
TED can be expensive! Let’s talk about the costs associated with thyroid eye disease. (Susan)
- What TED-related costs have surprised you the most?
- How have you navigated insurance challenges?
- Have you found resources or programs that help with costs?
- What advice would you give someone newly diagnosed about planning for TED expenses?