News & Events

In November 2023, the GDATF proudly announced the publication of our groundbreaking patient survey results on thyroid eye disease (TED) in Frontiers in Endocrinology, titled “How Patients Experience Thyroid Eye Disease.” (1) This comprehensive study sheds light on the quality-of-life challenges faced by individuals living with TED.

This important project was made possible through funding from Amgen, Inc. (formerly Horizon Therapeutics) and in collaboration with the renowned experts who proposed the idea for the survey: Dr. Terry J. Smith, Dr. Laszlo Hegedüs, Dr. Ira Lesser, and Dr. Petros Perros. The effort was supported by the team at rareLife solutions.

Key Findings: Living with Thyroid Eye Disease

The survey, which included 62 questions and a free-form response section, uncovered critical insights into how TED affects patients’ lives. Topics covered included:

• Time to Diagnosis: The delays and challenges many face before receiving a TED diagnosis.
• Symptoms Experienced: From bulging eyes to double vision, light sensitivity, and more.
• Impact on Daily Life: Difficulties with work, hobbies, relationships, and mental health.
• Treatment Effectiveness: Patients’ perspectives on various treatment options.
• Insurance Barriers: Struggles with getting health insurers to cover necessary treatments.

The stories patients shared were deeply moving. One patient recounted a moment when a child at a restaurant said, “Look, Dad, that man has scary eyes.” Another, a nurse, expressed fear of losing their independence. Many described battling depression, giving up cherished hobbies, and enduring multiple surgeries.

Amplifying Patient Voices

Following the publication of the survey results, the GDATF dedicated hundreds of hours to organizing the narrative comments shared by survey participants. These personal stories are now indexed by themes like mental health, social and family impact, and career challenges. They are available on our website for anyone seeking deeper insights into the lived experience of TED.

For those eager to explore the findings further, we have hosted two informative webinars:

1. Highlights of the Original Paper – A detailed overview of the survey results.
2. Additional Insights and Future Research – Exploring untapped areas for further study.

Both webinars, presented by GDATF Executive Director Kimberly Dorris and GDATF Founder Nancy Hord Patterson, Ph.D., are available online.

Thank You to the TED Community

To the patients who participated in this survey, we cannot thank you enough. We understand how challenging it can be to spend extended time on the computer, especially with the visual and physical discomfort caused by TED. Your courage in sharing your experiences is invaluable and has helped amplify the voices of those living with this condition.

Building Awareness and Support

If you’re a doctor, caregiver, friend, or co-worker of someone with TED, we hope this research and the accompanying narratives deepen your understanding of the condition. TED isn’t just about symptoms like bulging eyes, swelling, or redness. It’s about the profound impact on mental health, careers, hobbies, driving, and relationships.

For patients, we hope these stories remind you that you are not alone. The TED community stands with you, and the GDATF is here to provide resources, support, and education.

If you or someone you know needs assistance, please contact us at 877-643-3123 (toll-free in the USA and Canada) or email us at info@gdatf.org.

Together, we can continue to raise awareness, drive research, and support everyone affected by thyroid eye disease. If you are inspired to support this vital work, please consider making a donation to the GDATF. Contributions help us fund critical research, develop educational materials, and expand outreach to patients and caregivers. Visit gdatf.org/donate to join us in making an impact today.

Every contribution, no matter the size, brings us closer to a future where no one has to face thyroid eye disease alone.

(1) Smith TJ, Hegedüs L, Lesser I, Perros P, Dorris K, Kinrade M, Troy-Ott P, Wuerth L and Nori M (2023) How patients experience thyroid eye disease. Front. Endocrinol. 14:1283374. doi: 10.3389/fendo.2023.1283374 https://www.frontiersin.org/journals/endocrinology/articles/10.3389/fendo.2023.1283374/full

This project was funded by an educational grant from Amgen, Inc., formerly Horizon Therapeutics. Amgen, Inc. 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.