TED Survey 2022-2023

In November 2023, Frontiers in Endocrinology published “How Patients Experience Thyroid Eye Disease”, which highlighted selected results from a GDATF-commissioned survey of the thyroid eye disease patient community. (1) This project was completed with a medical education grant from Amgen, Inc. (formerly Horizon Therapeutics) (2).

“How Patients Experience Thyroid Eye Disease” offers patients, physicians, and caregivers a comprehensive look at quality-of-life issues for those living with TED.  Thank you to the clinicians who developed the original idea for a patient survey (Dr. Terry J. Smith, Dr. Laszlo Hegedüs, Dr. Ira Lesser, and Dr. Petros Perros) to Amgen, Inc. for financial support, and to rareLife solutions for helping us bring this project to fruition.

Our endless gratitude goes out to the members of the TED community who took the time to complete this lengthy survey, consisting of over 60 questions, including three with free-form responses. (3) We know first-hand that our community members living with TED often have a limited amount of time per day where activities on the computer can be comfortably completed, and we are honored that you took the time to share your personal experiences with us.

The published manuscript included a handful of quotes from the narrative responses received, but we are posting them in full here, organized by category. Comments are completely unfiltered, with minor edits for punctuation/spelling and standardization of brand names. Comments that were nearly identical were combined. Comments that touched on multiple issues were split up, with each segment placed in the appropriate category. If a comment was applicable to multiple categories, the comment was included under each applicable category.

This project was a labor of love, but ultimately required many, many, many hours of labor! If you are sharing this material, kindly cite the original article from Frontiers in Endocrinology, “How Patients Experience Thyroid Eye Disease” and also provide credit to the Graves’ Disease and Thyroid Foundation in an easily visible, readable format.

If you are a doctor, family member, caregiver, friend, or co-worker, we hope that reading these narrative responses in full will give you a better understanding of living with thyroid eye disease. It’s not “just” about the bulging, swelling, double vision, tearing, dryness, redness, or light sensitivity. Thyroid Eye Disease is all of that – but in addition, TED can impact our mental health as well as affect our ability to work, to engage in hobbies, to drive, and to socialize. If you are a patient, we hope that you will see yourself in these stories and understand that you are not 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

(2) Amgen, Inc. (formerly Horizon Therapeutics) 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.

(3) The free form response questions were:

Q59. What is the reason for your choice [of which treatments respondents would like their doctor to use]?

Q61. Is there a reason that you may not be able to have the TED treatment of your choice?

Q62. Is there anything else you'd like to tell us about being diagnosed with or living with TED?

How Patients Experience Thyroid Eye Disease - Narrative Comments by Category