Welcome to the TED Community!

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.

TED Health Care Team Defined

PREVENT BLINDNESS DECLARES THE 5TH ANNUAL
Thyroid Eye Disease (TED) Awareness Week
November 18–24, 2024.

The week aims to educate people about TED, increase recognition of the disease, and help people at risk identify symptoms and find a specialist. Raising awareness during this week encourages early diagnosis, treatment, and support for those affected by TED.

Let’s ensure no one need walk alone with thyroid eye disease!
TED Community Organization

making peace with thyroid eye disease TED

“Making Peace with TED” is the subject of a TED ART project.

Artist’s Statement

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:

Stay up to date with the TED Community!

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.

Read the full research article here.

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

The last five years have seen great strides made in the management of TED, and the next five years look to be equally exciting for the TED community.

View the Rare Revolution online version.

Such an honor to have the TED Community Organization and co-founder Christine Gustafson featured in Rare Revolution magazine.

View the Rare Revolution online version.

Thyroid Eye Disease (TED) Common Symptoms

Light Sensitivity

Watery Eyes

Gritty Eyes

Red Eyes

Bulging Puffy Eyes

Double Vision

Thyroid Eye Disease (TED) Fact Sheet

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.

Read the full report about thyroid eye disease here.