My Story

Kevin’s Story

Kevin was 28 when he was diagnosed with has facioscapulohumeral muscular dystrophy, or FSHD. “I don’t want my identity to be my muscular dystrophy. I don’t want people to think I sit at home and can’t do anything. I don’t ever want to have a day where I don’t have lots to do.”

Leading an active life with muscular dystrophy has its challenges, but Kevin takes them all in stride. There was the frustration this former distance swimmer and three-time Junior Olympian felt when he couldn’t swim 25 yards. And the time he was headed to a black tie dinner only to cancel his plans when he learned that one of the two wheelchair cabs in town was broken. “That was a real ah-ha moment. I don’t want to be in that position again…the position of not being able to do something because of my limited mobility.”

Kevin was living in Washington, DC when he was diagnosed with FSHD. As the muscle inflammation, wasting, and loss of balance got worse, his doctor suggested he move someplace warmer that had FSHD specialists. Kevin chose Atlanta. “I took a big pay cut. I was looking for a less stressful job with really good insurance. My new company offered long term disability insurance from day one. I was thinking long term without making it sound like I was thinking long term.”

“Stairs were tough, but I could do them. Then I decided to use the cane, and then the crutch. I had six trips to the ER during the first two and a half months of the year, all from falls. My doctor said next time it would be a broken hip, and I’d be in the hospital for months. That’s when I got the wheelchair. Now I can do so much more.”

Earlier this year Kevin decided to go on disability. Volunteer work keeps him busy, and his physical and mental health has improved. He works with the Humane Society and helps lead a fundraiser supporting AIDS vaccine development. He’s registering to be a citizen lobbyist during the next Georgia legislative session. Kevin also has an idea to help others with FSHD. “We need something to help people when they’re first diagnosed. New patients ask the same questions. It’s overwhelming to learn you have a disease you can’t even pronounce. Social media is helping connect patients and break down the isolation faced by many with FSHD.”

As Kevin enters his second decade living with muscular dystrophy, he laughs that he turned 40 and got a minivan in the same month. “I don’t think that’s how your midlife crisis is supposed to go.” When asked if he thinks about the next ten years, he says “I can’t go there. I can’t stress about the things I can’t control. Today my life is great.”

CDC would like to thank Kevin for sharing this personal story.