Behind the Mystery: Fibrodysplasia Ossificans Progressiva (FOP)

[@nancysando2839]

Thank you all for your comments on this video. To answer the "dumb question" there are times during a flareup that you do lose much movement overnight. As a younger person with fop passive range of motion exercises are helpful as well as swimming and the like. I try my best to live my life as full as possible and have little room for pity. Because of all the challenges I have I have to think outside the box to get simple tasks done but they get done and most of the time it's successful. Thanks once again for watching my video!

[@martin.janicek]

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!

[@cl5470]

Thank you for opening up and telling your story.

[@martin.janicek]

@@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.

[@shaunwilliams8738]

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.

[@jennifer7582]

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?

[@michellemichelle5202]

Jeez this disease seems so horrible. I’m glad to see she’s managed though and has people who love her to help her though it all.

[@jquigley9502]

Hey Nancy, I have been researching about FOP for my science class and I would just like to say that I really respect how you go through so many hardships with this condition and you still persevere and do everything to the best of your ability. I know life with FOP is really hard, but I pray for you that you will live great for all the years to come.

[@Crisis-stove]

It is so interresting how some very important muscles like those for breathing, the heart and the tongue arent affected

[@Mittencarpentry]

Good information! Nancy is a wonderful lady.

[@igor-yp1xv]

What an incredible story and incredible person. She's very resilient.

[@CharlotteForbes]

You're a very brave, articulate, and beautiful woman Nancy. Thank you for sharing your story with us so that we may learn from you and from others with this rare disease.

[@pupsforlifefamclips8441]

She’s lucky people who get this usually don’t live up to 40 years

[@camillastyrbk9135]

Lucky? To be crippled? Wtf

[@tombrady5986]

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

[@myheartwillstopinjoy8142]

@@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.

[@drexlspivey3047]

​@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.

[@ValourCreed]

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

[@Livinglife57]

I love you Nancy. I have osteoporosis and keep fracturing my vertebrae. I’m actually in a hard corset this is about the fifth fracture. I broke lifting a bag with 4 items in it. I get depressed sometimes but you have given me motivation

[@jessicalynnkinsleyfaith]

God bless you Nancy you’re an inspiration to everyone. You’re a beautiful person with such a bright positive attitude for all the struggles you have been through, I look up to you and because of you and your amazing outlook on life I changed the way I look at things, I’m grateful and will never take health for granted anymore. Thank you Nancy🤍

[@tiffanycarper420]

Nancy is a beautiful woman.Andy Sando was a very good family friend of ours. We moved to CA before they got married, I wish we would’ve been able to meet her as well.❤❤ He was an amazing man and a talented artist as well.

[@willberry6434]

Simply amazing her bravery in the face of this

[@princessm6355]

Praying for a cure ASAP

[@SUPRAMIKE18]

This is probably a dumb question but if someone has the very early stages of this, if they are active and move the muscles very often would it keep the muscle from turning completely to bone? Or do you go to bed one day and just wake up stiff as a board?

[@Anisimeria]

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

[@eamonreidy9534]

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)

[@bizarreisthenewblack]

great video, love nancy ♡

[@dongheekim6321]

Iam suffering from this illness too, but I don't have any one to stand with me can find me and offering help to me

[@billblaski9523]

Sure what do u need?

[@tinyGrim1]

Wow, if they can figure this out ? Why not any specific cancers ? I.e. liver cancer. Breast cancer. Etc. Maybe they know, but a person is born with it ? Why would you tell someone young, you have this gene & will more than likely get " liver cancer " by 50 or whatever. Would we want to know, should we know, and then having kids ? Biology is a mind bender.

[@Girrrrrrrrrrrrrl66]

God bless you ma'am.

[@juliaevans6273]

poor nancy

[@BlaacHollow]

Anybody know of the boy from Oregon, William Elicott? how's he doing?

[@anim9915]

37 years old

[@dongheekim6321]

Iam suffering from this illness too, but I don't have any one to stand with me can you find me and offering help to me,please?

[@billblaski9523]

Yes, how can we help?

[@mainanawacho5322]

Where are you

[@billblaski9523]

@@mainanawacho5322 NYC

[@himanirmala8597]

I'm also one of them🙃🙃🙃😶😶😶😶😶😶

[@abegailudenwa1960]

My sister has this disease too and its horrible

[@himanirmala8597]

@@abegailudenwa1960 sss....

[@billblaski9523]

@@abegailudenwa1960 my cousin has this too

[@albertoanonimo8522]

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

[@Just-Some-Helium]

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.

[@sujokacupressure22]

God bless

[@molkwi9077]

2:45 Wow, I didn't know that swellings could be swollen. Damn. Learn something new everyday

[@Stalemarshmallow]

This is such a fantastic example of: don’t be a selfish dick and share your body with science

[@hatednyc]

Montell Williams?!

[@AlcottKing-n2s]

Robinson Sandra Martinez Michael Hall Charles

[@HuxleySabrina-u8l]

Brown Steven Martin Jason Williams Ronald

[@JeffreyWest-p2u]

Harris Helen Harris Ruth White Susan

[@joshdiehl8620]

SMH

[@QuantumVoid-ro3hi]

We're on "the cusp" of "sort of" "developing" "treatments" that offer "hope and potential". What is that supposed to even mean?

[@ostridgesaccount3204]

😯😪

[@theklown8820]

Cool disorder sad for the people who get it but you gotta admit it’s a cool disorder

[@zesrabtanjeelkhan377]

What's so cool about it?

[@theklown8820]

@@zesrabtanjeelkhan377 the skeletons

[@hannah-jaimesgold3754]

I think interesting is a better word

[@theklown8820]

@@hannah-jaimesgold3754 meh cool works too

[@hannah-jaimesgold3754]

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

[@MacadamMarcus-y1x]

Robinson Michael Lopez Margaret Wilson Maria