DUBLIN—Monday marked the start of the first-ever Thyroid Eye Disease (TED) Awareness Week, taking place from Nov. 16 to Nov. 20, to increase awareness of TED—a serious, progressive and vision-threatening rare autoimmune disease. TED Awareness Week has been established through a collaboration among Horizon Therapeutics and several advocacy organizations including the American Autoimmune Related Diseases Association (AARDA), the Alliance for Eye and Vision Research (AEVR), the Graves’ Disease and Thyroid Foundation (GDATF), and Prevent Blindness. Each organization is committed to the TED community and has a variety of activities planned, including the sharing of educational information and resources throughout the week, according to an announcement from Horizon.
While TED most commonly occurs in people with Graves’ disease, it is a separate disease that can occur without the presence of Graves’ disease and requires a different treatment approach. Symptoms may include eye grittiness, redness, swelling and pain, light sensitivity, eye bulging, double vision and facial disfigurement.
TED is a rare disease that is often misunderstood and misdiagnosed, so it is critical to educate people who are at risk for TED so that they can better recognize the symptoms, know how to find a TED specialist, and feel empowered to get the support and care they need. It is also critical to educate the public about TED so that everyone can be supportive of those impacted by this disease.
To commemorate the first TED Awareness Week, Horizon is launching TED Today, a daily, online talk show designed to educate, empower and entertain viewers by delivering valuable information from a variety of perspectives, including TED patients, caregivers, and specialists. TED Today will be posted to the Listen to Your Eyes Facebook community page each morning during TED Awareness Week.
TED Today will focus on a range of topics relevant to the TED community, including the critical role of the caregiver, building a strong care team, learning to be your own best advocate, and maintaining positive mental health while living with TED. TED Today will also feature patient advocacy organization interviews and information advising patients and caregivers where they can find important online resources, including a tool for tracking symptoms and a TED Specialist Finder.
“When I was diagnosed more than five years ago, I didn’t know where to turn and felt isolated living with a rare disease,” said Beatriz Mallory, thyroid eye disease patient advocate and co-host of TED Today. “I’m honored to participate in this important event, share my experience and hear the inspirational stories of others. I hope that our actions to educate and raise awareness of Thyroid Eye Disease this week and beyond will help motivate people who are living with or are at risk for developing this debilitating disease to advocate for themselves, find a community, and get the support and care that they deserve.”
“At Horizon, we are focused on addressing the needs of patients living with rare diseases, including Thyroid Eye Disease, not only with therapies, but also by providing tools and resources to help patients actively manage their disease and improve their experience,” said Tim Walbert, chairman, president and chief executive officer, Horizon.
“Through our collaboration with AARDA, AEVR, GDATF and Prevent Blindness, we are encouraging patients, physicians and advocates to continue sharing personal stories and educating about Thyroid Eye Disease with the hope of shedding light on this truly life-altering disease. We are proud to support the first Thyroid Eye Disease Awareness Week and look forward to establishing it as an annual milestone.”
In related TED news, the Alliance for Eye and Vision Research (AEVR) is hosting a November 19, 2020, global virtual Briefing recognizing the first annual TED Awareness Week. Held from 12:00 – 1:15 pm, interested participants can RSVP to Dina Beaumont at firstname.lastname@example.org, call (202) 407-8325 or click here. The Briefing, streamed globally with support from the Association for Research in Vision and Ophthalmology (ARVO), features speakers Gary Lelli, MD, who serves as the vice chair of ophthalmology at Weill Cornell Medicine, and Christine G., a TED patient advocate.
Find additional information about TED at ThyroidEyes.com.