Kevin’s story
Kevin was 28 when he was diagnosed with 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.
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 was living in Washington, DC, when he was diagnosed with FSHD. As muscle inflammation, wasting, and balance got worse, his doctor suggested he move someplace warmer that had FSHD specialists. Kevin chose Atlanta.
“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.”
Kevin laughs that he turned 40 and got a minivan in the same month. When asked if he thinks about the next 10 years, he says, “I can’t go there. I can’t stress about the things I can’t control. Today my life is great.”
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