How I Increase Awareness for Thyroid Eye Disease

There are many ways to advocate and help increase awareness for thyroid eye disease (TED) and other medical conditions. Besides having discussions with my friends and family here are a few avenues that I have chosen to focus my efforts on.

Share my experiences in the online TED community

I remember searching for patient-focused resources when I was first diagnosed, and I was very frustrated with the lack of options. Sure, there was a lot of clinical information online, but I wanted to learn about the every day personal experiences of other patients.

Also, I’m sure we each have specific factors in our lives that combined with TED makes each person’s situation unique - I wanted to hear from someone whose experience was somewhat close to mine. I wanted a sense of togetherness, rather than feeling alone. So when the opportunity to write for thyroideyedisease.net came to me, I jumped at the chance to write the types of articles I wish were available when I was searching.

Discuss TED in communities focused on related medical conditions

I also have celiac disease, and many years ago I began blogging and posting on social media about my experiences with that condition. Though those channels were originally intended to be focused on celiac disease, they’ve grown to include my journey with Graves’ disease and TED.

While most of my readers and followers do not have those conditions, researchers believe there is a link between celiac disease and autoimmune-related thyroid conditions like Graves’ disease and Hashimoto’s Disease, and many individuals with those thyroid conditions (most notably Graves’ disease) also have TED. ¹

I hope that if any of my readers are experiencing unexplained symptoms related to TED, perhaps my advocacy could help them recognize those symptoms and get answers faster.

Educating other professionals/non-specialists

While I see an ophthalmologist who specializes in TED, I separately go to a optometrist for vision checks and to order new glasses. I switched to a new optometrist, and she asked about my general history and if anything was going on with my eyes.

I explained that I have TED and had recently gone through several surgeries. She was interested and asked me more about TED, my experience, if I liked my doctor, and which hospital he’s affiliated with. She said that it was a very helpful discussion because while diagnosing and treating TED are not in her scope of practice, if a patient comes into her office with suspected symptoms, she would like to be able to at least point them towards a positively reviewed specialist who might be able to help.

Participate in focus groups

Rare diseases often have very few treatment options, so I’m always excited to hear when researchers are in the process of creating new treatments and resources. In general, I’ve been told that focus groups are very helpful when it comes to understanding the patient experience, how a patient would prefer to use a drug or device, and identifying hurdles.

Compared to clinic trials which often have specific participation/location requirements, long time commitments, and other components about the drug itself to consider, I do find that focus groups in general are a much easier commitment. I would certainly consider participating in a clinical trial in the future if I quality, but that opportunity hasn’t come my way. I’ve primarily been able to participate in focus groups, and it feels good knowing that my voice is helping to shape future treatments.

Increasing awareness about thyroid eye disease

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