Behind the Mystery: Fibrodysplasia Ossificans Progressiva (FOP) 

Thank you Nancy! Daughter of my friend have been diagnosed with FOP so I started researching it and come across this video. Your attitude and the way you approach the obstacles in your life is a huge inspiration!

Thank you for opening up and telling your story.

@@cl5470 Nancy, may I have a couple of questions for you? Sorry for taking your time, it's kinda hard for me to find place to ask something to people experiencing FOP. 1) Are you aware of any group (on a social media or anywhere else) where people diagnosed with FOP (or their family, friends etc.) could join, share their stories and ask relevant questions? 2) Did you (or anyone else you know with FOP) have a flare up from e.g. strength exercises and overloading your muscles? I'm trying to think of alternative ways of how to work with a kid in a way that it gets more resilient to injuries. But it's almost impossible (with the limited knowledge available on the internet) to judge whether certain option (e.g. active stretching + strengthening) can help the person or be totally counterproductive and actually make the situation worse. I see no better option than to ask people experiencing FOP to make "qualified decision" about whether to try something or rather not. Guess if there would be one person that had a flare up from muscle overload, I would be too afraid to go that path.

I’m glad I got to hear your story Nancy, I send best wishes in your way. While I don’t know anyone personally with FOP, I have researched a lot about it over the years. Is there something someone like me can do to help those with the condition (even if it’s as little as donating money)? I don’t want to do nothing about this anymore.

Nancy, it might sound silly, but as a fellow knitter I was driven to distraction by your stash and fair ribbons! What kinds of things do you knit for competition?

Lucky? To be crippled? Wtf

@@camillastyrbk9135 lucky to be alive he meant but yeah it’s horrible

@@camillastyrbk9135 I don't think she'd like to be pitied. She's trying her best to live a happy life and crippled or not, she deserves it. Edit : interestingly enough, the very woman's comment is under yours. Confirmed, she doesn't want pity and she's doing fine.

​@myheartwillstopinjoy8142 She isn't just crippled. Her body is turning into a mannequin. There's another lady who bent her knee once and it's been stuck like that for a decade. They can't chew because their jaws are fused shut. They use their lips to mash food and then push it thru their tiny gaps in teeth. This is torture plain and simple.

@@drexlspivey3047we aren't mannequins or statues. Don't sensationalise us.

I think it can start in areas where moving won't change much. And of course during sleep it's gonna get worse no matter what you do

Moving muscle more accelerates the condition and increases the frequency of flare ups. Children diagnosed are stopped from physical exertion, they are not given any injections, surgeries or anything that would cause trauma. (Unless absolutely absolutely necessary)

Sure what do u need?

Yes, how can we help?

Where are you

@@mainanawacho5322 NYC

My sister has this disease too and its horrible

@@abegailudenwa1960 sss....

@@abegailudenwa1960 my cousin has this too

My sister to, she has 17 years, and it's so happy yet

Theres so many dudes here with FOP, Isn’t it a thing with only 800 people have? I don’t wanna judge but I think someones capping.

What's so cool about it?

@@zesrabtanjeelkhan377 the skeletons

I think interesting is a better word

@@hannah-jaimesgold3754 meh cool works too

@@theklown8820 i mean sure just not very sympathetic for the people that actually suffer