The work of patient advocacy organisations supporting people with thyroid eye disease
If you or someone you know has recently been diagnosed with thyroid eye disease (TED), you may have questions and concerns. As well as discussing these with your healthcare teams, you can contact one or more of the patient advocacy organisations in your country, or elsewhere. Here, we give an overview of the work of some of the organisations working to support people with TED. As you connect with other people, bear in mind that people experience conditions in different ways, and they may respond differently to treatments
Being diagnosed with any rare condition can be a lonely and isolating experience—the patient most likely will not have heard of the condition, let alone know somebody with it. Even their doctor may not have previously encountered it, which may make getting the right information at the right time an ordeal.
Fortunately, there are several organisations supporting people affected by thyroid eye disease (TED) and advocating for them. These patient advocacy organisations (or PAOs as they are often called) play a crucial role in getting accurate information to the people who need it, and in creating supportive communities where people can share their experiences.
The Autoimmune Association supports patients living with thyroid eye disease and other autoimmune conditions through advocacy, awareness, education and research. Its president and CEO, Molly Murray, says: “We support patients throughout their journey—from getting a diagnosis to identifying treatment options, accessing care, managing comorbidities and improving their quality of life.” The US-based organisation leads initiatives at the state and federal levels to ensure patient-first health policies, and it fosters innovation and the development of new and more effective treatments.
The Graves’ Disease and Thyroid Foundation (GDATF), which is based in the US, supports patients by providing credible, evidence-based information about thyroid eye disease and by connecting patients with people who “truly understand” what they are going through. The foundation’s founder, Nancy Hord Patterson PhD, says: “When I was initially diagnosed, I thought Graves’ disease and thyroid eye disease would be something where I’d take the medicine and get on with life. As many have discovered, this is NOT always the case.”
“Patients with severe thyroid eye disease can lose everything: their ability to work, to live independently, to enjoy hobbies and to engage with friends and family. For many patients, not looking like themselves is even more of a burden than altered vision—often leading to anxiety, depression and social withdrawal.”Kimberly Dorris, executive director and CEO at GDATF
A public health advocacy organisation, Prevent Blindness works to ensure that all patients and their care partners have the resources they need to continue learning about their conditions, including TED, and what steps to take to prevent significant vision loss. Jeff Todd, its president and CEO, explains that the main purpose of the US-based organisation is “to ensure that everyone is informed about vision and eye health, has access to quality eyecare, and that financial inequities are not a determinant of vision impairment”. It strives to save sight through early detection, education/awareness, treatment, mental health support and access to care, through various no-cost programmes and resources.
Prevent Blindness has a dedicated webpage on thyroid eye disease, offering detailed information on everything from risk factors to treatment options. As well as fact sheets and shareable social media graphics in English and Spanish, there are also YouTube videos and other resources that focus on the impact that TED may have on mental health. The organisation has an art therapy programme specifically designed for individuals with TED and their care partners. Registered art therapists tailor the topics, themes and materials to their needs.
Christine Gustafson is the executive director and CEO of the TED Community Organization. The group, based in the US, offers 12 free services: online peer support groups, in-person meet-ups, TED videos, TED podcasts, TED ART, TED research and resources, TED ED (webinars), TED social media, one-to-one buddies, a Dear TEDe advice column, an email newsletter and an online forum. “We are building a TED Care Portfolio that meets the one affected by TED where they are most comfortable,” Christine says.
Rebecca Ford is the committee chair for the Thyroid Eye Disease Charitable Trust (TEDct), a UK-based organisation. She explains how the organisation provides information and education in the form of online resources, videos and newsletters, supported by advice from expert healthcare professionals. Its Facebook forum offers peer-to-peer support from over 1,000 members, and its phone helpline gives one-to-one support for those who need it. It also runs patient information meetings, face-to-face and online. She says: “Educating healthcare professionals about TED is critical to improving TED care, and we also support educational resources for professionals looking after TED patients.”
TEDct funds small research projects related to TED via its partnership with eyecare charity Fight for Sight. It also funds prizes for best TED research presented at some UK scientific meetings, to try to encourage new researchers to think about TED as a topic for research.
The executive director of Vision Health Advocacy Coalition (VHAC) is Josie Cooper, who sums up the US-based organisation’s work: “We educate patients, providers and policymakers on the importance of timely and appropriate access to physician-prescribed therapy.” The organisation’s patient and caregiver empowerment forums bring together patients and healthcare providers to discuss the basics of the condition, stigma and treatment options. The forums “arm patients with the information necessary to advocate for appropriate care,” she says. VHAC also has a robust library of resources, including an insurance navigation toolkit, animated videos, policy papers, and shareable infographics and social media graphics.
All of these organisations’ efforts are a great support to the TED community. However, as Jeff says, “there are many unique issues that individuals with TED face.” He believes there is a “significant lack of awareness and education about TED, its relation to other conditions, such as Graves’ disease, the difficulty in diagnoses, access to care and the costs associated with the condition”.
Kimberly agrees that more needs to be done to raise awareness of TED. Despite some progress with this over recent years, patients are still facing delays before they get a diagnosis. “It’s especially difficult for patients to get a correct diagnosis if their TED occurs either without thyroid dysfunction or long after thyroid dysfunction has been treated. Certain interventions are more effective during the active phase of the condition, so misdiagnosing TED as allergies or other issues costs valuable time.”
Rebecca adds that “very many patients have received one or more incorrect diagnoses before TED is recognised”. She says that addressing this is critical: early interventions can enable treatment to be more effective and avoid the distress of misdiagnosis and inappropriate treatments. “Early diagnosis may become even more important as more specific drugs become available for treatment of TED,” she says.
“We have identified several unmet needs for people affected by TED. The first is rapid access to trained professionals able to make an early diagnosis.”Rebecca Ford
For Christine, there is a “tremendous need for a dedicated space where all those affected by TED can find comprehensive education, readily available support and interpersonal connection with others who are also dealing with TED”. This need informs her organisation’s quest to ensure “no one need ever walk alone through the TED journey”.
There are, Rebecca says, “very few services available for social and psychological support of people experiencing TED, and this was one of the main reasons TEDct was set up more than 30 years ago.” The psychological consequences of this eye condition are serious, she explains. Patients need to deal with the impact of altered facial appearance, the effects of vision problems and the fear of visual loss. “TED often affects people who also have fluctuating levels of thyroid hormones, which can affect mood, and treatments such as steroids can also affect people psychologically.”
Josie believes that access to treatment as well as mental health comorbidities continue to present challenges within the TED community. “Those affected by TED are already managing a complex condition, often with a burdensome treatment regimen, and any interruptions to access can negatively impact their physical and mental health. Patients deserve direct, uninterrupted access to the medications and treatments shown to treat their physical and mental health.”
Availability of rehabilitative surgical treatments can also be an unmet need. Rebecca says: “In some places patients who need surgery can experience difficulty getting access to experienced TED surgeons. Surgery that is actually reconstructive may be considered ‘cosmetic’ by some health services, making it difficult to get funding approved.” She hopes that increased awareness of the impact of TED and the benefits of effective medical, surgical and psychological treatments will help affected people to efficiently access the care they need.
Disclaimer: The above list of patient advocacy organisations is not exhaustive. Inclusion on the list or omission from it does not reflect an endorsement or otherwise of that group by RARE Revolution or Viridian Therapeutics, or vice versa. RARE Revolution and Viridian Therapeutics are not responsible for the content of external sites linked to within this article. This article has been made possible with support from Viridian Therapeutics. Viridian had no editorial or copyright control over this content. Views are solely those of the contributors.