By Josh Saunders
A brave woman is turning to ‘stone’ because of an ultra-rare condition that causes bone to form in her muscles and creating a second skeleton.
Jasmin Floyd, 23, from Danielson in Connecticut, USA, is battling Fibrodysplasia Ossificans Progressiva (FOP) – a disorder where her muscles, tendons, ligaments and connective tissue is calcifying.
She was diagnosed with the condition – of which there are only 800 recorded cases worldwide – before turning six-years-old suffering agonising pains in her neck.
Over the years, Jasmin’s muscles have gradually turned into bone, meaning she’s lost mobility in her jaw, neck, shoulders, elbows and hips.
During some of her worst flare-ups she struggles with intense pain as well as finding it difficult to speak and eat, as she can only open her mouth one centimetre wide.
The condition also means she is forming a second skeleton, that is slowly restricting her ability to walk and at times confines her to a wheelchair.
But undeterred by her problems, she’s determined to fulfil her bucket list of traveling and experiencing new things before her condition fully immobilises her.
Jasmin said: “The extra bone that has grown in my joints, is causing severe limited mobility, they describe it as bone forming over the joints, locking them in and impairing mobility.
“My spine is severely affected with scoliosis, the bone grows somewhere it shouldn’t and for me it’s been more active in my upper body.
“Due to FOP’s progression, I’ve lost full mobility in my neck and jaw and partial mobility in my shoulders, elbows and hips.
“Last summer I went through an elbow flare-up and couldn’t unbend it without easing it with an ice pack.
“At the same time, I was also losing mobility in my jaw, which made everything much more difficult.
“My most recent flare-ups have been in my jaw, right now I can only open my mouth by a centimetre and can’t open it any further.
“The conditions often described as stone man syndrome, referring to the extra bone and it’s like a person is turning into stone.
“I usually just tell people my muscles are turning into bone, I’ve gotten so used to explaining my condition now that I have it memorised.
“Because my condition is so unpredictable it’s encouraging me to do everything I want to while I can.
“I like the experiences and learning from having to navigate different scenarios and experiencing new things.”
Jasmin was born with bumps on the side her big toes, one of the initial signs of FOP but it was undiagnosed until later in life.
She experienced her first symptom when she was five, which her parents and doctors initially dismissed for a pulled muscle.
Later she would be diagnosed with the condition that affects approximately one in every two million people worldwide and only 300 diagnosed cases in the USA.
She added: “I was complaining of a stiff neck on the way to kindergarten so my parents just thought it was how I slept and nothing to worry about.
“At the end of the school day my neck seemed abnormally positioned and it looked stiffer than normal.
“When I was six, there was one small bump towards the bottom of my back, my parents continued noticing new bumps and progression every year.”
During puberty, her condition exacerbated leading to further restricted movement.
Due to the extra bone growths in her joints and the second skeleton that is forming, she can’t lift her arms above her shoulder.
Jasmin said: “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.
“I have a hard time bending and can tell I’m losing the ability to move as easily.
“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.
“I think 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.”
To combat this, she has specially adapted tools to help her with everyday tasks.
Jasmin added: “I have something that I’m able to use to turn the stove top on, since I can’t reach to turn the knobs.
“I’ve been able to adapt to some things with tools, like I have an extended bent hairbrush that my dad made for me so that I can brush my hair independently.”
As her condition worsens over time, she could be left completely paralysed but says this ticking time bomb has encouraged to pursue her dreams.
She’s now trying to travel to as many new cites as she can and continuing public speaking to raise more awareness of the condition.
Jasmin said: “I’m concerned about the future, how my life will change if it becomes harder to talk or travel, that’s always on my mind, it’s hard not to dwell on that, it can easily consume your thoughts.
“I guess it’s motivated me at this age to do as much as I can and pursue certain things I want to experience.
“I’m really focused on travelling and any new experiences I can have, I want to try new things and do more sightseeing in different cities.”
Jasmin is fundraising to purchase mobility aids that will enable her to travel easier as well as ease her daily life.
She added: “I’m hoping to purchase mobility aids to travel with, it would make me feel way more independent and allow me to travel more.
“These aids will mean, I’ll be able to keep up with people easier and not need to take breaks when I’m walking.
“I also will be able to plan more trips and do as much as I can while I’m able.”
To donate visit: www.gofundme.com/jasminfloyd