What Does Bringing Awareness to Thyroid Eye Disease Mean to You?

Living with thyroid eye disease (TED) can be challenging. It can change your appearance, affect your confidence and self-esteem, and be hard to explain to other people who do not have TED. It is important that we bring more awareness to this condition.

With that goal in mind, we asked our health leader team to share their answers to this question: "What does bringing awareness to thyroid eye disease mean to you?"

Health leader responses

Hope shared:

"To me, awareness is the foundation for compassion and advocacy in relation to medical conditions. When I think about raising awareness for a rare disorder like thyroid eye disease (TED), I see opportunities.

Speaking openly about my experiences as a TED patient helps my family, friends, and peers understand my struggles and strengths as they relate to the disease. I find that raising awareness helps my community understand what drives me, celebrate my successes, and recognize where I need the most support. By creating empathy for the experiences of patients with TED, awareness establishes the disease as a real problem, despite its rare occurrence rate.

To me, awareness means both a connection to my patient journey and a commitment to grace and forgiveness when my symptoms create limitations. Rather than feeling embarrassed about struggling with my vision or eye pain, I feel welcomed, appreciated, and heard when my family and friends use their understanding of TED to alleviate my stressors.

For example, I struggle with my vision during 3D movies. But my friends’ awareness leads them to suggest creative solutions like a drive-in theater instead. Additionally, my family’s awareness leads them to support me through my weaknesses, like offering to drive at night when my double-vision is most distracting.

Awareness can appeal to ration and logic as well as sympathy and sincerity. Rather than reacting harshly out of anger, my family and peers meet me with compromise. They understand that many of my choices and actions are driven by the ever-changing limitations of my TED.

This heightened consciousness can also be extended to the medical community. By garnering attention for the disease, awareness helps us recognize the scientific pitfalls of our understanding. Awareness changes the perception of rare diseases by creating a scholarly demand to feed our comprehension of disease mechanisms. Without this drive, the scientific community often fails to perpetuate the necessary research to create new treatments and identify cures.

Identifying these gaps drives the medical community toward improvements in research and treatments that would otherwise go unnoticed. Awareness acts as a means of alerting a problem and lays the groundwork for advocates to fight for both medical and emotional support. By recognizing that the struggles of TED are both real and persistent, awareness gives the rest of the world the opportunity to understand."

Roxann's reasons that bringing awareness to TED is important are:

"The positives of bringing awareness to TED are many. Awareness leads to earlier diagnosis, a better understanding for patients of the symptoms and changes in their eyes, and an understanding of how the symptoms affect our mental health and quality of life.

It is said that early treatment for TED is so important to prevent damage to the optic nerve causing vision problems including blindness. This statement always gave me pause because it took me 2 full years of going to many different doctors before I finally got a diagnosis. So that was 2 years of progressive symptoms, but no treatment. I did struggle with blurry vision and double vision, but thankfully no damage to my optic nerve.

Along with TED awareness week in November and all of the television commercials addressing TED, more prospective patients are getting an earlier diagnosis. And more doctors are aware enough now to refer patients to a TED specialist.

I know if I had seen these commercials talking about the exact same symptoms that I was dealing with, I would have sought out a TED specialist. Had many of the optometrists who misdiagnosed me or dismissed me seen these commercials and followed the TED awareness information, they also could have referred me to the appropriate doctor. After diagnosis, there is still a need for more awareness.

For me, as well as many TED patients I have talked to, there was a fear of the unknown, as this disease seems to ravage our faces. Even though TED can affect everyone differently, there are some constants that we find comfort in knowing.

I wanted to know what to expect. I had questions like: How long will I stay in the active phase? What kind of permanent damage can I expect? Once my eyes have stabilized, could they become active again? I had so many questions, but, rightfully so, the answer was always, "We have to wait and see."

For me, being able to follow my TED peers and their journey through the active phase, their treatments, and their surgeries helped me understand my own symptoms, and know and believe they were all typical of TED.

It was reassuring seeing their outcomes and knowing they struggled with the same challenging symptoms as I did. This made my fear more manageable.

Even though my fears were more manageable, I recall having to work very hard at preserving my quality of life and not giving in to isolation and depression. My active phase was 3 years. That is a long time to live around all of the challenging symptoms like bulging eyes, retracted eyelids, blurry and double vision, swelling in the face, and the list goes on.

During TED Awareness Week 2021, I read, 'TED impacts the way a patient sees, looks and feels, affecting their ability to perform activities of daily living (driving, reading, working on a computer) and often resulting in depression, anxiety and social isolation.' This was so therapeutic and validating for me. Knowing that TED affected others like this allowed me to understand and be more accepting and compassionate to myself.

I am thankful for how empowering TED awareness has been for me as I continue my journey with TED. Moving forward, I am determined to continue to learn and understand the insights and treatments that keep coming because of the spotlight on TED. I can use this knowledge to help myself as well as my TED peers."

Jessica shared her reasons, too

"In my opinion, bringing awareness to TED is about so much more than just the symptoms and treatment. While those components are important, it’s also about discussing the very personal, emotional, and vulnerable nature of this disease. Furthermore, I have 3 main focal points in my goals to help increase awareness.

Creating missing resources. This is so I can help those with TED feel more prepared or confident as they navigate their own journey. When I was first diagnosed, I found a lot of articles online that primarily discussed the symptoms of TED.

But I had so many questions that these websites didn’t seem to cover: How do I speak with my doctor? What red flags should I be on the lookout for so I can know when I should seek out a second opinion? What will my recovery for various surgeries really look and feel like? Was there anything I could do that could help me feel more like myself while I waited for treatment? I do my best to create the patient-focused resources that I wish had been available when I was first diagnosed and searching for answers.

Hopefully helping those with TED feel less alone. When my endocrinologist first discussed TED with me, I didn’t know anyone else with the disease. I find that this is often the experience of those with rare autoimmune conditions, and it can feel very lonely. I always hope that by sharing my experiences – the good, the bad, the scary – I can help others feel a little less alone while we all continue to navigate this difficult road.

Educating loved ones outside of the community. It’s so difficult for those without TED to truly understand what we’re going through. I strive to discuss the emotional side of TED, explain how dramatically TED can impact daily life, and have an open discussion about how hurtful some words can be and that sensitive topics should be approached with equal sensitivity.

I hope that my advocacy on this site can help others outside the direct community understand a little more about the disease and perhaps help provide a foundation for future discussions.

Also, navigating TED is frankly exhausting. My experience has been very emotionally and physically taxing, and it has drastically affected my mental health. I’m a big believer that advocacy can and should look different for everyone, and that taking breaks is incredibly important.

We cannot give all of our emotional energy all the time. We would have nothing left for ourselves. Increasing awareness is a team effort. I like to think that when I have the emotional energy I take a step forward, and when I need to take a step back I’m extra grateful for the work that others in the community are doing."

What does bringing awareness to TED mean to you?

So now we ask you, the members of this amazing community, the same question. What does bringing awareness to TED mean to you? We would love to hear about your perspective, experiences, and journey! Share a comment in the comments section, visit our forums, or share your story!

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