Rare Diseases

'Second skeleton': Woman's rare disease turning muscle tissue to bone

A 23-year-old woman is gradually losing the ability to move her limbs as a rare genetic disease turns her muscle tissues and connective tissues into bone. Jasmin Floyd, of Danielson, Connecticut, was diagnosed with fibrodysplasia ossificans progressiva (FOP) 18 years ago and has been developing what can be described as a second skeleton ever since, The Washington Post reported.

“It was the hardest, darkest time of our lives,” RoJeanne Doege, Floyd’s mother, told The Washington Post. “We were helpless. There was nothing we could do. It was going to take on a life of its own.”

Floyd’s parents noticed she was born with a bunion on her big toe, and that she was developing small bumps on her head and spine. Although a bump on an infant’s big toe is a hallmark of the disease, at the time, doctors told Floyd’s worried parents that they were harmless osteomas. But as Floyd aged, her joints became stiffer and harder to move, The Washington Post reported. By age 7, she couldn’t rotate her shoulders, and had to relearn how to switch on lights and turn water faucets.

According to the U.S. National Library of Medicine, symptoms of FOP become noticeable in childhood, beginning around the neck and shoulders. Later, FOP causes difficulty speaking and eating, which can lead to malnutrition. Patients may also experience issues breathing as extra bone forms around the rib cage and restricts lung expansion. Only several hundred cases of the disorder have been reported, as it afflicts approximately 1 in 2 million people worldwide.

“As I got older, I started to learn more about what FOP was,” Floyd, who can only open her mouth about a centimeter, told The Washington Post. “Now when something happens, I know what’s happening and why it’s happening.”

Floyd told the news outlet she has developed unique ways to accomplish simple tasks, like using a longer hairbrush to get ready and a “reacher” to pick things up.

“I’ve accepted it the best I can, but it’s not something I can put behind me,” Floyd told The Washington Post. “I dread brushing my teeth. I never used to have any dietary needs, but now I have to avoid crunchy or chewy foods. My jaw gets tired easily.”

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Floyd has started a blog called “One Spirit, Two Skeletons,” to help others understand FOP and the difficulties she faces. Her most recent post, titled Finding Acceptance, detailed some of the body issues and insecurities she’s dealt with and how social media campaigns like #DisabledAndCute have helped her find acceptance.

“The world felt a little smaller, somehow safer, more inclusive,” she posted. “It felt like we were all one big family without even having any direct interaction with each other.”

Her doctor, Frederick Kaplan, head of the Division of Orthopaedic Molecular Medicine at the University of Pennsylvania’s Perelman School of Medicine, told The Washington Post that surgical intervention would cause “catastrophic explosions of new bone formation.”

Kaplan said most patients succumb to a restrictive chest wall disease by age 40 or 50, according to the report.

“The other difficult part of FOP is that you don’t know when the next flare-up is going to occur, how long it’s going to last, how painful it’s going to feel and how disabling it’s going to be,” Kaplan told The Washington Post.

Floyd shared on her blog that her left hip has been in a flare-up on and off for about five years.

“Even though I have fears, I do my best to make things happen so I can experience something,” Floyd told The Washington Post. “My motto is to try as much as I can for as long as I can and not let anything stop me from achieving.”