-- Nationwide campaign spotlights mental health impact of living with TED --
For Mental Health Awareness Month and Healthy Vision Month in May, Horizon Therapeutics plc (Nasdaq: HZNP) is partnering with mental health expert and New York Times best-selling author, Lori Gottlieb, to highlight the emotional burden of living with TED – a serious, progressive, and potentially vision-threatening rare autoimmune condition.1
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The campaign encourages people living with TED to write a “Dear TED” letter directly to their disease about the effects it has had and how they are taking back control of their health and getting the care they need.
“Living with a rare or chronic disease is a very personal experience that can sometimes feel isolating and overwhelming,” said Gottlieb. “Sharing this experience in an open letter to your disease is not only therapeutic, but it can help others to feel less alone and inspired to speak up about their own symptoms and seek care sooner.”
TED is a chronic, or lifelong, disease that can cause vision impairment, making day-to-day activities such as walking, driving and working challenging. Symptoms like eye bulging, redness and double vision can cause some people to no longer look like themselves, resulting in feelings of self-consciousness.2,3 Consequently, people living with TED may stay home more often, which can impact connections with friends and family. In fact, nearly half of patients with TED (42%) were found to experience anxiety and/or depression, based on a 2021 quality of life assessment survey.9
“Writing a ‘Dear TED’ letter was so liberating because I realized I’m stronger and more confident than I ever gave myself credit for,” said Gail S., who lives with TED. “My relationship with TED hasn’t been easy, but because of what I’ve been through, I take pride in everything I’ve accomplished. I hope that sharing my ‘Dear TED’ letter can be a source of support for others and inspire them to do the same.”
The “Dear TED” campaign features educational resources to help those living with or at risk for TED, including:
- New Listen to Your Eyes podcast episodes sharing tips from experts on dealing with both the mental and physical toll of living with a chronic condition
- Videos and personal stories from others living with TED on the Listen to Your Eyes Facebook, Instagram and YouTube channels
- Thought starters and letter writing tips for people ready to take back control of their health, starting with writing their own “Dear TED” letter
While TED can feel overwhelming and defeating at times, there are steps people living with or at risk for TED can take to best manage the condition. It is important to monitor eye symptoms and take weekly pictures to capture any changes in appearance. At the first sign of change, find a TED Eye Specialist and make an appointment. Early diagnosis and treatment are critical, given the progressive nature of the disease. Being your own advocate by asking questions and seeking a second opinion can help lead to the best outcomes.
To submit a “Dear TED” letter, visit DearTEDLetters.com.
About Lori Gottlieb, MFT
Lori Gottlieb is a psychotherapist and New York Times bestselling author of “Maybe You Should Talk to Someone,” which has sold more than a million copies and is currently being adapted as a television series. In addition to her clinical practice, she is co-host of the popular Dear Therapist podcast produced by Katie Couric, and writes The Atlantic weekly “Dear Therapist” advice column. She is a sought-after expert in media and her recent TED Talk was one of the Top 10 Most Watched of the Year. She is also the creator of the brand new “Maybe You Should Talk to Someone Workbook: A Toolkit for Editing Your Story and Changing Your Life.”
About Thyroid Eye Disease (TED)
TED is a serious, progressive and potentially vision-threatening rare autoimmune disease.1 TED causes the muscle and fat tissue behind one or both eyes to become inflamed or swollen. While TED often occurs in people living with hyperthyroidism or Graves’ disease (up to 50% of people living with Graves’ disease – the most common form of hyperthyroidism – may develop TED), it is a distinct disease that is caused by autoantibodies activating an IGF-1R-mediated signaling complex on cells within the retro-orbital space.2,3,4,5,6 This leads to a cascade of negative effects, which may cause long-term damage to the eyes. Resulting symptoms include debilitating pain, dry, gritty, watery, or teary eyes, and light sensitivity, among others.2,3 As TED progresses, the serious damage it can cause includes proptosis (eye bulging), strabismus (misalignment of the eyes) and diplopia (double vision) – and in some cases, can lead to blindness.7,8 Additional information on TED can be found at ThyroidEyes.com.
Horizon is focused on the discovery, development and commercialization of medicines that address critical needs for people impacted by rare, autoimmune and severe inflammatory diseases. Our pipeline is purposeful: We apply scientific expertise and courage to bring clinically meaningful therapies to patients. We believe science and compassion must work together to transform lives. For more information on how we go to incredible lengths to impact lives, visit www.horizontherapeutics.com and follow us on Twitter, LinkedIn, Instagram and Facebook.
- Barrio-Barrio J, Sabater AL, Bonet-Farriol E, Velazquez-Villoria A, Galofre JC. Graves’ Ophthalmopathy: VISA versus EUGOGO Classification, Assessment, and Management. Journal of Ophthalmology. 2015:2015:249125.
- Lazarus JH. Epidemiology of Graves’ orbitopathy (GO) and relationship with thyroid disease. Best Pract Res Clin Endocrinol Metab. 2012;26(3):273-279.
- Smith TJ, Hegedüs L. Graves’ Disease. N Engl J Med. 2016;375(16):1552-1565.
- Eckstein AK, Losch C, Glowacka D, et al. Euthyroid and primarily hypothyroid patients develop milder and significantly more asymmetrical Graves’ ophthalmopathy. Br J Ophthalmol. 2009;93(8):1052-1056.
- Weightman DR, et al. Autoantibodies to IGF-1 Binding Sites in Thyroid Associated Ophthalmopathy. Autoimmunity. 1993;16(4):251-257.
- Pritchard J, et al. Immunoglobulin Activation of T Cell Chemoattractant Expression in Fibroblasts from Patients with Graves’ Disease Is Mediated Through the Insulin-Like Growth Factor 1 Receptor Pathway. J Immunol. 2003;170:6348-6354.
- Bartalena L, et al. The 2016 European Thyroid Association/European Group on Graves' Orbitopathy Guidelines for the Management of Graves' Orbitopathy. Eur Thyroid J. 2016;5(1):9-26.
- McKeag D, et al. Clinical Features of Dysthyroid Optic Neuropathy: a European Group on Graves' Orbitopathy (EUGOGO) survey. Br J Ophthalmol. 2007;91:455-458.
- Cockerham K, Stuertz N, Padnick-Silver L. Quality of Life Assessment of Chronic Thyroid Eye Disease (TED) Patients in the United States. Presented at: North American Neuro-Ophthalmology Society Annual Meeting; February 20-23, 2021.