(CNN)It’s impossible for those who have fibrodysplasia ossificans progressiva, or FOP, to describe what it’s like to live with it.
They can tell you to imagine you’re bound so tightly you can’t move any of your joints: Your neck, jaw, shoulders, wrists, hips, knees and ankles are all locked in position.
They can tell you to picture being frozen in a block of ice, where no one can move your limbs.
But nobody is really able to comprehend being trapped in your own body.
Jasmin Floyd has FOP. Over time, her muscles, tendons, ligaments and other connective tissues are turning to bone, forming a second skeleton. It’s “one of the rarest, most disabling” genetic conditions known to medicine, according to the International FOP Association, with just 800 confirmed cases around the globe. Floyd is one of about 285 confirmed cases recorded in the United States.
“It’s intimidating. … Something I can’t control is trying to take over my body,” she said.
At 23, she’s already lost the ability to reach her arms above shoulder level and to move her neck. Her close friends know to sit on her right side because she has to turn her whole body to look to the left. She struggles to pick things up due to extra bone growth on her back.
This summer, a flare-up on the right side of her face locked her jaw. She’s still trying to figure out what she can eat without opening her mouth more than a centimeter.
When she’s not traveling, she likes to conserve her energy. She watches TV with her Maine Coon cat, Prancer. She writes on her blog, One Spirit, Two Skeletons. She’s trying to figure out how she can move out and capture this fleeting time of independence. But with each flare-up, she and her mom worry more about the future.
By the time she’s 30, Floyd knows, she might have to rely on a wheelchair or be housebound. Yet she remains upbeat.She’s sarcastic and sassy and rarely loses her sense of humor, Doege says. Floyd’s blog is full of posts about her family, friends and travels.
In an update November 30, she wrote, “My sudden jaw flare-up was a reminder that my abilities and independence, including traveling by myself, could be taken away from me at any time because of FOP. I’m determined to continue making crazy plans, taking risks, and having the types of experiences I had this year for as long as I’m able.”