TED Community Organization
TED Community Organization is comprised of patients, caregivers, medical professionals, and individuals who advocate for those dealing with Thyroid Eye Disease (TED). In essence, we are a community of individuals who have the shared living experience of TED.
As a dedicated Thyroid Eye Disease (TED) 501c3 nonprofit, our vision and quest is to ensure that no one need ever walk alone through the arduous and often isolating TED journey. To this end, we provide education, support, and connection for all who are affected by TED.
Our TED Survey identified 12 services that those affected by thyroid eye disease would like to see offered through our website. Thus we are currently building these FREE programs into our TED Care Portfolio:
- Educational Webinars
- Patient Story Podcasts
- Online Support Groups
- Thyroid Eye Disease Videos
- In-Person Workshops and Conferences
- TED eNewsletter
- TED Opportunities
- Dear TEDe (Online Q&A Advice)
- Research & Resources Library + Clinical Trials
- TED ART Meet Ups
- TED Connect (One-on-One Support and Friendship)
- Social Media: Facebook, TikTok, Instagram, LinkedIn
ORIGINAL RESEARCH article
Front. Endocrinol., 09 November 2023
How patients experience thyroid eye disease
A study led by Dr. Terry Smith, Kellogg Eye Center, Department of Ophthalmology and Visual Sciences and Department of Internal Medicine, University of Michigan Medical School, Ann Arbor, MI, United States
The findings reported here reveal a perception among patients that some physicians lack an awareness of TED and fail to recognize the signs, symptoms, and negative impact of this disease on QoL. These shortcomings likely underlie, at least in part, the unmet needs of patients with this disfiguring and potentially sight-threatening disease. The persistence of important and bothersome disease manifestations clearly impacts activities of daily life, regardless of disease duration. It is essential that physicians and other healthcare professionals who are treating TED become more familiar with patient experiences such as those described here. Results from our survey should invigorate the importance of long-term follow-up and management of patients. Their healthcare providers need to better accommodate the needs of these patients and improve their journey with TED.
Interview with Dr. Terry Smith by TED EDU host Dr. Layla Lohmann
This study received funding from the Graves’ Disease and Thyroid Foundation through an educational grant from Horizon Therapeutics, USA (Grant number 2022-00035). Horizon was not involved in the study design, collection, analysis, interpretation of data, the writing of this article or the decision to submit it for publication.
Summer 2023 Print & Digital Edition
Informative TED Articles made possible by Viridian Therapeutics
Thyroid Eye Disease (TED) Common Symptoms
Light Sensitivity
Watery Eyes
Gritty Eyes
Red Eyes
Bulging Puffy Eyes
Double Vision
Graphics and fact sheet courtesy of Prevent Blindness.
Want to know more about the TED Community? Listen in to this recent podcast with host, Lauren Freedman.
Learn about the founding the TED Community Organization, the first nonprofit dedicated solely to thyroid eye disease.
With support from Horizon, Listen to your Eyes, and podcastone.
American Academy of Ophthalmology, 2023 article, Thyroid Eye Disease (TED):
Thyroid eye disease (TED) is an autoimmune disease caused by the activation of orbital fibroblasts by autoantibodies directed against thyroid receptors. TED is a rare disease, which had an incidence rate of approximately 19 in 100,000 people per year in one study. The disorder characterized by enlargement of the extraocular muscles, fatty and connective tissue volume. Graves’ disease (GD) is an autoimmune disorder involving the thyroid gland, typically characterized by the presence of circulating autoantibodies that bind to and stimulate the thyroid hormone receptor (TSHR), resulting in hyperthyroidism and goiter. Organs other than the thyroid can also be affected, leading to the extrathyroidal (outside the thyroid gland itself) manifestations of GD. TED is observed in ~ 50% of patients while Graves’ dermopathy and acropachy are quite rare. TED was previously known as thyroid-associated ophthalmopathy (TAO), Graves orbitopathy (GO) and other variations.
Learn more about Thyroid Eye Disease (TED)
Portraits of Life with Thyroid Eye Disease
A TED Patient Story
The Graves’ Disease & TED Combo
Thank you for supporting our work on behalf of all those affected by thyroid eye disease!
How to connect with the TED Community Organization:
Visit our website: https://tedcommunity.org
Send us an email: hello@tedcommunity.org
Sign up for our eNewsletter mailing list.
Volunteer to join us in the building of the TED Community Organization.
Support the TED Community Organization with a financial contribution.
TED Community Organization
We Educate
We Support
We Connect
All those affected by Thyroid Eye Disease (TED)