Thyroid eye disease (TED) is an autoimmune condition in which the tissues behind the eye become inflamed, pushing the eye forward. Often, the eye and eyelid become red and inflamed, too.
TED often affects people who have hyperthyroidism as a result of Graves’ disease, so it’s sometimes called Graves’ ophthalmopathy.
Joining a support group may help you feel better prepared to manage the condition or care for a loved one living with TED.
According to the American Thyroid Association, thyroid eye disease is often very mild, and it can even improve over time.
However, in some cases, it can be severe and hinder the ability to perform daily activities. You may develop a sensitivity to light that keeps you inside and away from the sun or bright lights.
Your eyes may become red and gritty, and you may experience dry eye. Some people develop double vision, which can interfere with the ability to read, work on a computer, or drive.
Research from 2021 states that people with more severe symptoms report an impact on their quality of life, such as experiencing pain and changes to vision.
Benefits of joining a thyroid eye disease support group
By joining a TED support group, you would meet other people living with the same condition. Creating personal connections could help you feel supported and encouraged to manage symptoms.
Interacting in a group environment can help you learn tips from people living with TED. For example, you might share your best strategies for coping with dry eye and learn from someone who has found other helpful ideas.
You can talk about treatments you have tried, coping with side effects from medications, and whether surgery is an option.
Tips on finding a support group
You can start by turning to organizations that focus on thyroid diseases, such as:
You could also seek a local in-person support group by asking your medical team for resources.
If you care for someone with TED, you could consider learning more about the condition to support them.
You may find helpful information through an online group like the Listen To Your Eyes community.
You can also consider resources such as oneGRAVESvoice for information about the unique experience of caring for a person with TED.
Navigating any disease can be challenging. However, some changes could help you thrive.
If you have TED or are the caregiver for a loved one with the autoimmune disease, a support group could help you feel more prepared, teach you tips to manage symptoms, and help you connect with others on the same health journey.