Young woman has strange disease that converts her muscles into bone

When she was born, Jasmin Floyd had a small lump on her big toe. Then at the age of five, she woke up one day at her family's home in Connecticut with terrible neck pain. Her parents thought she'd just slept in an uncomfortable position. They expected the pain to disappear quickly but instead it got worse. Then they watched as Jasmin's neck began to harden and solidify. And this was just the beginning.

Today 23-year-old Jasmin lives in the prison of her body, awaking every morning to discover a new part of her musculature petrified, leaving her ever more immobile. She suffers from a horrible disease called Fibrodysplasia ossificans progressiva (FOP), which replaces muscles, tendons, and ligaments with bone.  

Her neck, shoulders, elbows, and hips are already part of what she calls her "second skeleton," and last month her jaw began the transformation process, too. She can still open it about an inch: "This progression affected many aspects of my life — primarily my diet, but also talking at length and being able to easily brush my teeth," she explained. Here's what the skeleton looks like in a person with FOP:

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Jasmin has maintained an extraordinary inner strength and positive attitude towards life despite her condition. She travels, goes to concerts, meets new people, and tries to have new experiences.

While her family has created "systems" to help her do things for herself (like a special hairbrush), she said that, "I try to be as independent as I can, but I can only raise my arms to my forehead and they don't move away from my body."

One thing is for sure: eventually Jasmin won't be able to move anymore. The FOP outbreaks will continue to occur until she's completely immobilized. There's no way to predict them. It appears that any small movement that causes pain can trigger them. So far medical research hasn't come up with any cure or treatment.

The only thing Jasmin has is some medicine to make her life a little more bearable.

"One of the hardest parts is trying not to be afraid of this condition, it's so unpredictable that I can never expect what will happen next," she explained. "It's important to not be totally blindsided if something does happen, I try to figure out a way to adapt around things and figure out my new normal."

On her blog, One Spirit, Two Skeletons, Jasmin shares reflections and hard-won wisdom, also discussing the progress of her painful disease. "Anyone who knows me knows that I'm not one to give up. I'm determined, resilient, and optimistic. I'm able to stay positive and I look for something good in every situation," she writes.

She's a true inspiration for others with FOP, for anyone with a disability, and indeed for all of us. Jasmin shows how much you can get out of life if you focus not on what you don't have but on what you do have — and never take it for granted!

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