Gail Devers is a world-renowned track star and three-time Olympic gold medalist who has been living with Graves’ disease and symptoms of Thyroid Eye Disease (TED) for more than 30 years. After a harrowing two-and-a-half-year quest for answers, Gail was diagnosed with Graves’ disease in 1990, just two years before winning her first Olympic gold medal. Her journey back to the track was nothing short of remarkable as she struggled with near career-ending symptoms, including extreme weight loss, tiredness, and insomnia. During this time, Gail also experienced eye symptoms including eye pain, bulging eyes, and light sensitivity, but she was never told that these eye symptoms could actually be a separate, but related, disease called Thyroid Eye Disease (TED). That’s why Gail is helping educate others living with Graves’ to focus on their eye health, so they can get the specialized care they need.
Watch the video below to hear her inspiring story, and listen to her podcast interview here.
Every doctor I saw told me:
As an athlete, I know my body and I knew something wasn’t right.
It’s 1988, I’m an American record holder in the 100 meter hurdles and headed to my first Olympic games in Seoul, Korea. I was living my dream.
But something was ‘off.’
Suddenly I was running slower than I ever had, and I didn’t make the finals.
I had dropped from 120 pounds to 80 pounds before I stopped looking at the scale.
My face was discolored. My skin was scaley, and my hair was falling out. I was tired all the time and yet I wasn’t getting any sleep.
I had trouble with my eyes, too. They hurt. They were bulging, irritated, and dry, and I couldn’t close my eyes fully when I slept.
Still, every doctor told me that there was nothing wrong.
Meanwhile, my training came to a stop, I covered up all the mirrors and I just wanted to black out the world. I felt like I had lost myself. I was desperate for answers. I just wanted to get back to being the ‘old Gail.’
Every day of my two-and-a half year quest for answers, I visualized myself getting back to the Olympics. I saw myself running my race, and I could see myself crossing that finish line.
Then finally, after almost three years of searching, I was diagnosed with Graves’ disease. I still had my goals and my dreams, so now I could start getting my life back on track.
With my Graves’ disease under control, and a lot of grit and determination, support from my coach and my family, two years later, I won my first Olympic gold medal.
I remember during my victory lap the camera man said, “Slow down. You’re supposed to enjoy this!” And I told him, “Look, you’d better keep up, ‘cause you don’t know what I’ve gone through!”
For more than 30 years now, I’ve been living with, and managing, my Graves’ disease. But in all these years, not a single doctor ever mentioned my eye symptoms were separate from Graves’.
I thought my eye symptoms were just part of Graves’ disease, but now I know they could be associated with a related, but separate, condition called Thyroid Eye Disease. This is something I wish I’d known all those years ago.
I still struggle with red, irritated eyes, eye pain, and light sensitivity today.
And that’s why I want to educate others.
First, know the symptoms of Graves’ disease. If you have a combination of weight loss, trouble sleeping, hair and skin issues, talk to your doctor.
Next, if you have Graves’ disease, focus on your eye health.
Up to 50% of people with Graves’ disease will develop Thyroid Eye Disease.
If you notice any changes in your eyes, like eye bulging, light sensitivity, or eye pain, don’t just assume they’re part of Graves’ disease.
Be your own best advocate. Write down the symptoms and report them to a TED Specialist.
Find a nearby TED specialist at TEDdoctors.com and make an appointment.
No one should ever go through what I’ve been through. But despite all the physical and emotional hurdles I’ve faced, I wouldn’t change my experience. It’s only made me stronger.
Now, my goal is to help others get the answers that they deserve. Always look past the hurdle; and focus on what comes next.
Take part in the Race to Diagnosis game to see if you can beat Gail.
Watch the video below to hear Gail read her ‘Dear TED’ Letter
Gail: Okay hold on.
You’ve been my unwanted house guest for 30 years. And now, you’ve got to go. We both know you’ve constantly interrupted my life, and for a long time made me unrecognizable to myself. The truth is, I just don’t want to do this anymore. For decades, you made my eyes a problem. Either bulging or dry and sore, or never quite able to close when I slept. And despite all my gold medals, you made sure I could hardly recognize the hurdles I was jumping over. You made me believe my eye symptoms were a part of my Graves’ disease, so I just put up with it. But now I know they were separate, and they were all you TED.
Do you remember that day at the park when the little boy pointed at me and said, “Mom, what’s wrong with her? She looks like a monster.” That’s when I stopped going out of the house. I covered up all my mirrors and I just wanted to black out the world because I didn’t know what was wrong with me. But now I know it wasn’t me, it was you. For years, I struggled to find a full night’s sleep, and I was afraid to tell my husband the reason I won’t drive at night is because the lights from the oncoming cars really bother me. I still can’t leave the house without my eyedrops, and I’ve lost count of how many times I’ve told people “No, I don’t have allergies.”
Had I known about you all those years ago, I would have gone straight to a TED Eye Specialist. Now, I have the care I need, and I won’t take my eyes off you. I’m getting my eye health back on track, and I’m reclaiming the real Gail Devers I’ve been looking for. I realize now, you were just another hurdle I had to figure out how to get over. And now I just want to help others get through the finish line faster.
If you live with TED, or you love someone who does, submit your own Dear TED letters and read stories from others. Visit DearTEDLetters.com
Don’t let Thyroid Eye Disease (TED) win. Take back control today by sharing your experience living with, or caring for, someone with TED.
Be a part of the movement and help reach others with TED! By sharing your Dear TED letter, even if it’s just a few sentences, you can empower others to get the care they need and help them feel less alone. Share your story.
Insights from TED Eye Specialists and others living with or caring for someone with TED.
Hear firsthand what it’s like to live with TED.
Hear a real TED story.
Get a step-by-step guide to building your own care team.
Learn how to IdentifEYE TED.
Living with TED: Journey to diagnosis and advice
Get tips on how to prepare for your in-office visit with a TED Eye Specialist.
Thyroid Eye Disease (TED) is a unique and rare condition. Learn more about the signs and symptoms of TED, and make sure you’re seeing a doctor who has experience treating it. Find a TED Eye Specialist.