Watch the 23-year-old woman who is turning to stone
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A 23-year-old woman is turning to stone due to her rare medical condition.
Carli Henrotay has Fibrodysplasia Ossificans Progressiva (FOP) – a rare medical condition which causes muscle and connective tissue to slowly change into bones which means it ‘turns people to stone’.
Carli says she cain’t raise her arms above her head, her jaw is locked and she has less than 2mm of opening, her shoulders and neck are also locked and she uses a wheelchair.
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Carli told Barcroft TV: “FOP is a one-in-two million disease, although there is evidence that it looks a little more than that the number publicized is one in two million and there are around 800 known cases in the world right now.point 302 |
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“FOP causes a lot of pain. I never know how to answer the question ‘on a scale of 1-10 what is your pain?’ because I live every day and every moment in pain. I am lucky that I have such a high pain tolerance.”
Carli used to love swimming and running outside before her diagnosis. But when she was diagnosed with FOP at five, her life changed.
Cari said: “I was diagnosed with FOP at five and a half so I was lucky enough that I got that normal childhood. But at the same time, I don’t remember life without FOP so I have all the memories of the normal childhood but without remembering what it was like to function like that.”
“Had I been diagnosed probably even two years later I would have had more memory living without FOP but I feel very fortunate that I still got that normal childhood, but I am also not resentful of the fact of not living without it.”
Despite all this, Cari has a positive attitude towards life. She says that she is disappointed that she can’t play sports or drive a car but this is not something that she can change.
She said: “I always try to look on the positive side and remember what I still have and I am thankful for that.”
Carli recently moved in with her boyfriend of six years Billy who she met in middle school. She says she is very excited to get in her new home with her boyfriend.
She said: “I am excited to get in my new home and see where my independence can take me but it also is a double-edged sword because I know it will hinder me as well.”
“I want people to understand that disability isn’t the whole part of me even though you can see it. You need to see more than the wheelchair and just see me as a person before you judge me for the disability.”