FORT MADISON, Iowa — An Iowa man was diagnosed with a rare disease that affects as many as half a million Americans according to Harvard Health.
Thyroid Eye Disease, also known as TED, is a condition where your immune system mistakenly attacks the muscle and fat tissue behind your eyes.
Coming off the heels of TED Awareness Week a Fort Madison man shared his story on what life has been like since being diagnosed in 2023.
“My eyes started to bulge, and I had dry eyes, like I had sandpaper or lint under my eye lid I could never get out,” said Shawn McVey. “And a lot of swelling around the eye as well and other things, but those are the worst. Double vision that was another bad one. So those are the three big ones.”
McVey, 60, said the disease hindered his ability to perform everyday tasks.
“One of the things I like to do as a hobby is play music, instrumental music, and I just couldn’t read the music like I used to be able to,” McVey continued. “I also got into silversmithing, making jewelry, and I couldn’t see the details. It was really hard I’d have to ask some friends ‘Did I get all the fire scale out?’ I couldn’t see like I used to be able to. I had to turn my whole body left and right when I drove. I had to do things with one eye. I had to read with one eye, shave with one eye, drive with one eye. So, yea, it was very defeating to tell you the truth.”
Many people with TED experience bulging eyes. This change to McVey’s physical appearance took a major hit on his confidence.
“People say, ‘Oh my gosh what happened to your eyes?’ and it’s like you got socked in the eye by something.” McVey said. “And it looks like you have bug eyes and all that swelling and your eyes are going in different directions and there twisted. It takes an emotional toll, so you got to have a good support network.”
Living in a rural area McVey has to travel around 90 minutes to Iowa City for TED Specialty Care.
Not many hospitals have the proper equipment to treat the disease.
Since being diagnosed McVey has found a doctor that has helped him feel much better or in his words “I feel like I won the lottery. to tell you truth because I had a good outcome.”
“I talked with my doctor found a treatment plan that works for me, and I just encourage anyone with Thyroid Eye Disease to speak up about what their feeling,” McVey added. “What it is they feel limited doing, what they’d like to be able to do and find a doctor that can help them figure that out and what’s best for their situation.”
According to the Cleveland Clinic women are five times more likely to get TED, but when men get it, it’s more likely to be severe.
TED is a lifelong autoimmune disease but with proper treatment you can help manage the symptoms.
If you suffer from TED or would like to learn more McVey recommends heading to Thyroideyes.com.
McVey wants all who have been diagnosed to know they are not alone and can head to Tedcommunity.org.
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