How People With FOP Live As Disease Turns Bodies Into Bone

Fibrodysplasia ossificans progressiva, also known as FOP, is a rare disease which turns muscle and connective tissue into bone that forms outside the skeleton. Over the years, Inside Edition has met with many people who have this rare illness to see what their lives are like and how they come together at events like annual conventions to help each other heal. Here is a glimpse inside the world these brave people face. #InsideEdition

[@star.set76]

I cannot even begin to describe how much I admire these people and their strength.

[@KhreamedKhorne]

As someone who works with disabled folks, I can tell you that they don't want our admiration or respect or any of that, they just want to be treated like people.

[@brandonforrester7342]

You gotta really give these people props for having such resilience, to not be crushed under the weight of what people might think of them, if they had been any mentally weaker, no doubt they would've had committed suicide by now.

[@MTC008]

the thumbnail of this video looks like the woman's photo being edited and cropped out in part

[@andyramirez470]

I gotta be thankful

[@KillerBeanG]

Im your 3.5k like

[@Abensberg]

when life is scarier than death...

[@duplicitouskendoll9402]

I'm amazed at how these people have the will to continue. This is absolutely heartbreaking to see. I wish for them and all the others suffering with this disease the very best in life!

[@Alexandra-dy2ns]

I've read they'll perhaps soon have a breakthrough in curing FOP and I really hope this is true. It's one of the worst diseases imaginable. My heart goes out to all the patients.

[@Kyle-m8b7l]

I hope you’re right

[@burlhorse61]

hope so-its heartbreaking

[@thetruthandnothingbutthetr6484]

When science has their breakthrough due to heard work and research y’all will just turn around and give the thanks to his even though he won’t do anything to help them right now

[@TheJomoe1]

@@thetruthandnothingbutthetr6484 wtf did you just say? you have fop in the hand?

[@M_Oz_]

@@thetruthandnothingbutthetr6484 the only person I will thank is the person translating your comment.

[@DarkAmbientEscapes]

Honestly makes you grateful for your fully able healthy body, sorry anyone has to live with this 😥

[@enniusdrusus867]

Almost half of them in the US. There's something in their water or their food.

[@millionaire365]

I pray that medical advancement will find a cure for anyone impacted by this.

[@Claycooo]

2:46 “his own ingenious invention” is just a long straw 😂

[@eb.3764]

I usually see women with a disabled partner, so it's refreshing to see two loves stories of the men being the caregivers

[@DwaineWoolley]

Be grateful for your health. Use it to accomplish your goals and do good

[@casey6649]

Jeez

[@jana-mb6si]

Dwaine Woolley .l

[@jana-mb6si]

I’m a big fan

[@dexterkiwibird1745]

I will lad, I will...

[@PaoloCanada]

grateful??! also not to be so, my god......is a terrible disease, i repeat so....TERRIBLE DISEASE FOR LIFE! so grateful of what, i don't get it, it's not a cold or a broken arm.

[@CrImSoN1708]

That thumbnail doesn't even look real.. like someone took an eraser in photoshop to her. Heartbreaking.

[@Kingvalles]

I’m going to hell for laughing when I read your comment

[@xdescend_]

Anthony Valles 😂

[@mzgymeni]

@@Kingvalles see u there 😩😩

[@MwSama]

it actually sad:( i thought it was photoshop :(

[@michelleversace6030]

looks like doodle bob started erasing her

[@glen4326]

I went to school with Ashley, it is amazing her spirit and tenacity shines through. I Hope they find ways to help those with FOP. Amazing job Inside Edition.

[@VaultYT.]

Wow really?

[@Syntappi]

Yeah, there is active medical trials. I'm participating one and it seems to be working. Too bad corona paused it for a moment and my condition got worse. Now i can't even walk normally anymore.

[@Snot69420]

@@VaultYT. yep, i was the school

[@SpEcImEn128]

Did u get the FOPussy?

[@chachaarealsmoothh]

i am also a school and I am really feeling you rn​@@Snot69420

[@mariateresitacortez2053]

Seeing them all dancing on the floor and having a good time made me realize that life is really meant to be celebrated, no matter what your predicament may be. Don't you think so?

[@floridashenanigans1382]

100% agree.

[@ricplays5905]

i agree, the outcome is the same for everyone so its best to live life at its fullest!

[@bobhughes9628]

They sure keep a stiff upper lip!

[@rai_5454]

no

[@melynn_0355]

Definitely though hopefully someday science will be advanced enough to prevent/cure things like this

[@bekahhooper9852]

Its really sad that there is not a cure for this....praying for all those people

[@ricekrispyy]

》Venom《 - maybe one day we’ll find a cure :)

[@edee.]

joek money did you just say the SYNDROME was man made? Or am I mistaken and you said the cure was man made?

[@vinhnham7400]

No money in a disease affecting a small number of people. Companies wont invest for research for small potential returns.

[@mrowll.7587]

Maybe surgery where they remove the bone but something like that will probably happen In 2100

[@Fun2654]

@@mrowll.7587 they already do that but the bone that was removed grows back twice as fast sadly

[@potaragaming4159]

That is why one shouldn’t take anything for granted....always be grateful of what you have because you never know what may happen.....

[@eli_xikmqq4104]

who knows, next thing you know you unexpectedly loose ur legs due to a car accident and now you can't walk anymore

[@miguelmiguel123123]

I take everything for granted

[@jjzzaabbyyco6383]

yes! even if it just scratching your eye , some people can’t even do just that ,

[@hypiransio4451]

Nobody ever takes notice of their ability to walk, talk and move. Even the little things can disappear.

[@sgdgsc3236]

AMEN

[@apacolypz11]

I normally am not so emotional watching videos like this, but this really broke me. We take so much for granted. Watching these three really changed my outlook on life.

[@DL84]

Am i a bad person if i laugh constantly

[@doomguydemonkiller]

@@DL84I would question that

[@michaelmyers3061]

​@@DL84yes

[@davedanger4414]

@@DL84 Mostly just sad and cringy to laugh. Or some attempt at 2007 edgy humor.

[@panner11]

It's really inspiring how positive they remain. I think that's the part that's really touching.

[@Morpeth_Harriers]

I couldn’t imagine living like that. I give all my condolences to them

[@grobanite4ever85]

I couldn't live like that either! I would want to be euthanized

[@arthurwaring]

Save some for later💀

[@isabellascorner3442]

Ikr i would be so depressed if i had to live like that... I give all of my condolences to them

[@Esmerelda4]

They have had this problem since childhood they don’t know any different 😒

[@dhhdhdbxndb5300]

It’s like a statue

[@gemgirl223]

Okay, that 70 year old in the wheel chair dancing to the music by rocking his wheelchair all crazy-like is how I want to be when I get older. He's having fun any way he can and I absolutely admire that.

[@NBid-rp9ch]

👌🏿

[@amandacharlebois9295]

He’s only 57... didn’t you watch the video??

[@C-126]

@@amandacharlebois9295 she means at 3:32

[@graceynextdoor]

I hope there's a cure soon, I can't imagine going through that everyday, they're so frickin strong, God bless

[@eli_xikmqq4104]

how does she use the bathroom though

[@napoleonbonaparte7529]

@@eli_xikmqq4104 probably have a caretaker and use a bedpan

[@ee4822]

@@eli_xikmqq4104 maybe don't think about that

[@jimscanoe]

"God bless"? Yeah, I guess this is definite proof of *Sky Daddy's* love all right.

[@sekkusupisutoruzu]

@@jimscanoe The internet wouldn't be the same without the occasional entitled atheist.

[@wesleydonnelly2141]

This video highlights just how unbelievably cruel and unfair life is at times. On a positive note, those peoples strength in adversity is incredible, and I salute them from the heart...

[@crawdaddyy]

I feel so sorry for the one lady who was misdiagnosed with cancer as a child, so they removed her arm. I’m sure her life is difficult enough as it is, nevertheless with a missing limb that shouldn’t have been missing to begin with

[@ohitsmookie2751]

Mannnnn 😢

[@driskey82]

And all it took was looking at her damn toes 💔

[@icantfeelshitatall6285]

medicine is not so simple especially in these genetic diseases. the doctors had the best intention at the time

[@crawdaddyy]

@@icantfeelshitatall6285 I completely agree. You work with what you have at the time. But hindsight is 20/20 and knowing what she knows now, I’m sure it just makes her sick

[@patrick6210]

Man, turning into a statue+ a lost arm due to misdiagnosis

[@danisewilliams549]

Blessings to all these people and the little angels. Please find a cure.

[@ganon01ryanoutsen92]

Agree

[@Moonshine449]

No cure for this

[@Leah_2112]

My cousin was diagnosed with this a while ago, hes about 16 now. They said he’ll probably live until his forties, but as of now, he can’t lift his head straight up or move his arms too far. I feel so bad for him...

[@cameroncalzone8860]

does he go to the fop convention? maybe he would like it

[@sleepingstudios4478]

Mega Cap

[@potatoesforlife1234]

1 of 800? I'm so sorry.

[@user-nn5dh3cs9s]

@@sleepingstudios4478 and you think this because?

[@tonyochoa4312]

@@cameroncalzone8860 it’s paralysis not this disease

[@tankthomus]

The amount of respect I have for these people is unthinkable. God bless em, and I hope they continue to live strong and positive lives in the face of immense adversity.

[@Ett.Gammalt.Bergtroll]

Seems more like god cursed them.

[@hannemanisunderrated5610]

Why did God give them this?

[@marasmusine]

@@hannemanisunderrated5610 "Hey there humans, I've invented a fantastic new genetic mutation I want to try out on you! ... What's that? ... Oh, for no reason in particular."

[@winniethepooh5605]

I can’t imagine having something like this, god bless them all 💞

[@eli_xikmqq4104]

well, u can still know what something is like without going through it

[@skywatson948]

Omg ur profile pic teehee

[@elizabetholiviaclark]

@@eli_xikmqq4104 Not this kind of thing, you can't. That's what I don't like about these various "Try on a disability day" events, where people have to go around blindfolded, or with one arm tied behind their back, for example. That's supposed to teach them something, but mostly it reinforces the notion that it sucks to have a disability. They learn nothing of society's response to it.

[@GrIs899]

Screw your profile picture

[@skywatson948]

pop bob who's

[@blondechick9804]

My heart breaks for any poor soul having this horrible disease, especially children. It doesn't even seem fair anyone should suffer like this . We live in a bad enough world having such a disability makes it worse. Bless anyone that doesn't look at their disease as a bad thing but sees past it and sees them as normal as you and me. To marry that lady and he is normal I really like that.That's what love is all about. Wish more people could be like this instead of being so vain and only worrying about looks.

[@Anna-346]

Yeah I agree but that lady is normal like everyone else

[@idgaf8266]

Ya i feel so Bad ༎ຶn༎ຶ

[@johntucker3695]

I have a question, this is kinda random but I just want to know everyone's thoughts. If during pregnancy you knew your child would have this disease, would you get an abortion to "spare" them?

[@blondechick9804]

@@johntucker3695 As a mother of 3 I have to say that's a hard answer. If they know 100% my child would have this and their life would be horrible, maybe just maybe. I really don't know if I could do it though. You would think that maybe soon they will have a cure or a med that will help them not get this bad. That may be enough to keep you from doing anything drastic such as an abortion,I think.

[@johntucker3695]

@@blondechick9804 Yeah, I had similar thoughts. I wouldn't want my child to go through a horrible life like this but I don't know if I would be able to do it because of something they would be born with. Because you kinda have to think that there will be a possibility that it's not so bad or that there might be a cure. Anyway, I was just wondering what your thoughts would be on a topic like this.

[@david894]

This makes my problems look insignificant. I admire and respect these people's positive attitude. After watching this, I don't feel I have the right to complain about much. It really puts things into perspective.

[@khadiah5486]

I agree

[@benner1320]

You have every right to complain. How bad somebody else feels don't make your problems insignificant.

[@YOTSUBA_desu]

Benner Yes it does, you have no grounds to complain when people like these exist

[@shirin8609]

@@YOTSUBA_desu False, and what you said constitutes a fallacy known as the "fallacy of relative privation."

[@Crinkfries]

@@shirin8609 yeah, I think they’re trying to say that they shouldn’t think they have the worst life ever or something.

[@Mugiwara2k]

I feel terrible for these people, no one should have to live like that. 😞

[@undeadhate944]

Yeah this is incredible distressing to watch.

[@larryputra3692]

damn this world is crazy

[@nuclear9977]

@@larryputra3692 1:12 got me bricked up 😘

[@bea-hindyou]

@@nuclear9977 👀

[@Zeppelin616]

They're stronger than I am that's for sure. There's no way I could live like that, I'd be playing Russian Roulette with a fully loaded revolver in no time

[@olmacdonald25]

I started crying after they showed the 3 year old kid having fun and dancing with another kid.

[@WyldEastTaylor]

Me too. He reminded me of my nephew. 😔

[@jennyatherton5922]

♥️

[@mollygirvan4558]

Same 🥺🥺

[@azazello1784]

why? that's not your problem

[@ORALEEEEE]

@Krazy Guy 😐

[@abdiabdi1990]

Watching this made me feel claustrophobic, I can’t imagine how it feels to be stuck in a position and not be able to move or stretch

[@pilesofkittens]

I know it must suck :(

[@doomslayer8431]

Sleep paralysis

[@RentFreeInsideYourDamnHead]

Getting stuck in a washing machine head first is much more scarier...

[@phobos5475]

@@RentFreeInsideYourDamnHead dude, its nowhere close

[@aaronlira]

@@doomslayer8431 only temp sucks

[@Skelux]

a local buddy has this, permanently stuck in a pretty normal sitting position. fortunately it was discovered early enough for him to choose the desired position to stay in. young lad has pretty normal interests and stuff, i can't imagine how rough it is.

[@MrMelgibstein]

Can you imagine being misdiagnosed and someone takes a machete to your arm.Sad

[@auxiliomedesmayocallesevie1718]

MrMelgibstein i don’t know how people amputate but I don’t think a machete is used

[@DejitaruKari]

@@auxiliomedesmayocallesevie1718 in some places

[@drawbootiful8665]

Løcø•Cøcøa i lmao pinché girl lol jkjk

[@esmegrant8442]

What’s even sadder is amputation makes movement go quicker so those doctors could literally have taken years off her life

[@nickrufo1979]

They use these things such as Scalpel with blades, Dissection and cutting scissors, Retractors and handheld clamps, Needle holders, suture material (absorbable and nonabsorbable), and forceps (fine and toothed), Diathermy device, Bone instruments (eg, saw, bone nibblers, osteotomes, mallet, and curettes), Irrigation NOT a machete

[@SLURM187]

I love that doctor. You can tell he really wants to help these people.

[@lukav3509]

its might be rare but its hell on earth, hopefully he finds a cure for the disease soon! bless this man

[@AnEffingPinkCatThatBreathes]

I honestly doubt they’re gonna find a cure I’m not gonna explain because I’m the worst without a plan for a good explanation

[@johnwt7333]

And all he did was to take himself pictures

[@cristophermarcos9322]

He about to do experiments on them

[@B31L]

Big L

[@kwol1ty620]

I thought someone photoshopped the thumbnail wrong...

[@oo0372]

Me too!!

[@LowBudgetJustinY]

But sadly it's a real disease

[@Ghostman223]

Me too

[@jamhopsey]

And it’s all because of a misdiagnosis that’s crazy...

[@thequintessential5503]

Jam Hopsey most doctors always due that as an excuse to torture patients

[@andrewb214]

I'm never complaining ever again....

[@kevintetrault1680]

E

[@acidolimpia3388]

Thanks Kevin for your godly minecraft presence

[@Pocol0c0s]

EA

[@Pocol0c0s]

@• nanzor • IT’S IN THE GAME

[@chriscopes5105]

This is a sad condition

[@seanelliott1625]

Same

[@eli_xikmqq4104]

yes, we shouldn't be thinking of this condition as "I'm glad I have it. I'm glad it makes me differen" like, this ain't no reward bruh frrr

[@Ewee689]

You shouldn't pity on them you should encourage them

[@chihuahua8419]

@@Ewee689 in fact. Look at the one who does not have an arm, she put her makeup on using scissors. So much corageous!

[@pupandruff]

666 likes

[@dailym0mo]

Dang I wish I could just take these people disease away

[@Erghhehe]

Ikr so sad I really wish I could have powers to take away all of these ppls diseases away🥺😔

[@Ligerbee]

Thank goodness we may eliminate all disease by the next 100 years or less.

[@Anna-346]

Same

[@silverdemon1530]

@LeilaTheBird not really

[@thecrack-in7122]

I know most of u believe in jesus and i wont fight that contiue that im not trying to change yoirt religion and not beong mean so dont take it offensively. But the god i believe in can tale care of all problem he coul make nobody die and he could make all bad things go away, but think about it if all things were good the world would probably be overpopulated which would have to lead to bad thihgs like days were ppl can kill anybody they wanted. But even if that's not the case, only Allah knows.

[@Zynphii]

Damn, this has to be one of the worst diseases I’ve seen

[@alisonzira5601]

Bro this is the worst.

[@jeepsblackpowderandlights4305]

cancer is the worst

[@Radistella]

This is honestly heartbreaking for these people. I feel so bad for them.😭😭😩😩

[@LowBudgetJustinY]

Yeah I dont think i would continue my life if i have that disease, bless those people..

[@paulangeloaguilar2164]

same this is sad 😞

[@buckets1]

It dat cheemss

[@ice3980]

600th comment like 😎

[@JaytheP]

Seeing these people struggle with this brutal disease is absolutely heartbreaking, seeing the kids is devastating. I hope there’s some progress to cure this genetic demon

[@jd_kreeper2799]

It might be possible to break the bone fusing the joints regularly but a true cure would probably require some way to make the genetic defect not create bone everywhere.

[@sarah2.017]

There's currently an experimental treatment in the pipeline that seems to work fairly well. It isn't a cure, but it slows the progression.

[@DiegoRodriguez-cs1ow]

Couldn’t hold back the tears when I saw the 3 year old

[@DespairKarma]

They're working on a treatment so they don't have to do what they do with other conditions which is constantly snap the bones at the joints and/or have multiple life threatening surgeries done all over their body all at once with tons of surgeons surrounding them.

[@vinnythevagguy]

I dont think of myself as a sensitive guy but seeing those sweet kids having so much fun dancing and thinking that a few short years from now this might not even be possible...that hit hard

[@Morpeth_Harriers]

God bless them

[@WASIURPA]

But god made them

[@falkerwyscray9067]

looks like they hadn't

[@nicolerh]

SGG exactly. God made them, and God doesn’t make mistakes.

[@vaktuz2k856]

Medicinal Blood then your life is meaning less

[@vaktuz2k856]

Pixell if the World was perfect how do you separate the good people from the bad

[@chickenlittle5455]

Ashley was just on sbsk and she’s totally bedridden now :( I hate that people have to go through this.

[@treysf4154]

When you think your life is the worst, think about these good hearted people with bodies literally turning to bone

[@nealkelly9757]

Yeah, damn

[@ChinaWhiteChinaWhite]

@Bodhi he’s saying you can’t complain about your life to others because there will always be people in worse situations than you

[@treysf4154]

@Bodhi How am I brushing off other peoples lives???

[@Neo-o]

@@ChinaWhiteChinaWhite Doesn't mean you should brush off your own issues either, I think is what this person is trying to say. Yes they do have it worse but it doesn't make your own situations irrelevant

[@treysf4154]

@@ChinaWhiteChinaWhite thank you

[@dianawright8334]

I hate that misdiagnosis took her arm that she so desperately needed

[@radpan9642]

It wouldn't have mattered

[@Saffins]

@@radpan9642 yes it would… Her having another arm could at least help her with her daily tasks.

[@carolnahigian9518]

yes she needs 2 arms for ACTIVITIES -,Daily. but she does pretty Darn GOOD

[@yswnova]

@@Saffins llllllll

[@aniahliepard]

It would’ve helped, yes, but for how long? Her other arm would’ve became just as stiff and she’d be back in the same position… just with two arms

[@luhole]

My heart breaks for them. They have incredible strength, but what a horrendous card to be dealt. Life just is not fair.

[@momillions4395]

Not fair at all smh I hate this world

[@squirrel8121]

Yup, God exist in this world, yup. God Bless!

[@foopock]

You said break because you also thought about breaking the bones too

[@helloworld2784]

That's why don't take your bodies for granted and take care of yourselves.

[@Dez083]

@@squirrel8121 god 😂

[@neonlights3739]

“With FOP sometimes all you can do is laugh, otherwise you want to cry.” Seriously this breaks my heart. God bless these people. It must be so hard to live such a way. It’s so kind of their loved ones to care for them. The fact that the doctor gets to personally know all his patients warms my heart.

[@JessASMR.]

@bell c@t that is true my friend.

[@screamingpencil]

@bell c@t Why doesn't he cure them now, so they can enjoy life?

[@mavisgrace5403]

Yeah God bless... what a blessing

[@mavisgrace5403]

@bell c@t reasonable

[@shaqyardie8105]

God bless these people? If God was real, he wouldn't allow them to be in this position in the first place.

[@hluna9938]

“ God has given me the ability to find the joy in the little things in life” I will never complain about my problems again. 🙏 ❤️

[@donmiller2908]

I know how you feel. I watched this and realized I don't have any reason to complain about anything.

[@krissianvictir1291]

God froze their asses lmao

[@synlezz9298]

Sure you will, but if you remember her outlook on life it can help you to be more grateful for what you do have ❤️

[@ericalopez369]

Your said a mouth full. WoW. This is by far one of the worst diseases I have ever heard of.

[@dinosar9230]

@@krissianvictir1291 That ain't very funny.

[@itsjanael3617]

Bruh when I saw the kids I literally wanted to. Cry

[@Palestine-h7z]

same.

[@Palestine-h7z]

@@mircocapra4531 This is NOT funny.

[@Palestine-h7z]

@@mircocapra4531 No.

[@Palestine-h7z]

@@snoopypajamapants WHAT is IT?

[@cinnamorollbun7120]

@@Palestine-h7z faking dumb things

[@Tomiply]

Did she really say God has given her the ability to find joy in life? *sigh* I don't get this obsession with religion in the US, speaking as someone from Europe. Your life is ruined and you're still thanking God. I don't get it.

[@SunBunz]

I can't imagine how painful this is....and it seems to just get worse and worse. Heartbreaking.

[@JupiterVortex]

Mentally painful 😭

[@SunBunz]

@@JupiterVortex especially, yes. 😥

[@loveispowerful6311]

I love how she still said that God allow her to still enjoy the little things. I just made me want to be more thankful for the things that I do have in my life.

[@boxingmmacars23]

@Barry Midikiner GTFO

[@es2kaaay908]

Thanks god for giving these people this condition ur the best 🙏

[@kelsca4415]

She actually goes to my church, I didn’t know she had this disease

[@bigman8243]

Zakaria Ogle you ok man?

[@TeslasTacos]

I read this as she said it.

[@punchy77855]

I’m actually crying, that’s love right there.

[@AmericanRX]

Hit me right in the feels. Hats off to the brave souls that have to put up with the disease and make the most of it.

[@JustIncredibleYT]

I cannot imagine living in that condition! I feel sorry for them.

[@marleywenzel3207]

Geez who trained the doctor? Who misdiagnoses somebody so bad that they lose their arm for no reason?

[@BazamO]

The consequences of ignorance.

[@kmarshirley]

Happens a lot actually. A doctor is just a hub of knowledge. They can't always know if they're right or not. They have to make guesses a lot. FOP is a rare disease. A lot of medical breakthroughs have come from doctors making mistakes. Trial and error.

[@Drakijy]

It is called "practice" for a reason.

[@michaelbujaki2462]

I can understand how it was misdiagnosed. There is a growth in someone's joint. Is it cancer that could spread if not removed, or is it that super rare bone disease that only effects 1 in 70 million?

[@Bignfluffy]

Its a RARE disease...doctors dont see this eveyday so how about you give him a break?

[@precious_556]

That’s why we have to be grateful for everything because not everyone has the same opportunities that we do.

[@sphjinx1448]

@ThatOne yes. It’s okay to reach higher. But the point this person was making, is that you may already have a privilege that some others don’t. So cherish, and be thankful for what you have at the moment. They said nothing about not being able to want more. Just be content with what you have, since not everyone can have that privilege.

[@Fau.]

should i be grateful for having crippling mental illnesses that affect the way i function every day?

[@nasywanmuhammadyusuf7d920]

@@Fau. remember some people have it way worse than you

[@juicethegoat223]

Yeah them homeless people should be damn grateful

[@nearthecite2031]

@@Fau. jeesh dude that's horrible, but as well your living and that's a great privileged live your life as much as you can, unlike these people tho they have a lot in their plate and can't always do the same thing as you

[@craneoDeFuego077]

Seeing the couples makes me happy, that those sweet men would take care of them so much and tend to their needs. It's just heartbreaking to see what these people have to go through every single day

[@m.m.family.305llc2]

Damn that’s sad 😞! And people wanna complain, be angry, hate, and be violent! After watching this no one should take anything for granted, or be mean at that! Take a moment of silence during quarantine, and pray for these individuals above in video👆🏾👆🏾👆🏾👆🏾👆🏾👆🏾, and stop being selfish! Ijs 🤷‍♂️! I’m praying for them, and all who’s going through things in life! 🙏🏾! Stay positive, stay motivated, live your lives, enjoy it! 🙏🏾 🦢

[@kt47793]

What an amazing comment I totally agree btw I was just wondering why you used the swan emoji it's just that where I come from it's the symbol of my city we're referred to as swans because our city is called Swansea lol

[@ethanworks9917]

Daisy Fields. Maybe he likes swans, and it’s meant to be a symbol?

[@melonnationxp]

I like Garfield

[@ScholarlyQ]

If I kill them will they drop bones and if I grind them down can I make bonemeal

[@yee1488]

It’s not selfish to be angry.... not cause they have a disease means that we can’t hate or be angry or complain (no hate)

[@blve-r3verie]

This shows that it’s good to appreciate what you have.

[@robloxsummer..]

Boi

[@robloxsummer..]

Yea

[@eli_xikmqq4104]

Like, appreciate the fact that you can see, hear, walk, talk, and eat. the things u don't usually think abt when u think of things to not take for granted

[@PrincessofKeys]

The 3rd one I saw so far that said this, just let people live...

[@toriladybird511]

One lady with this condition donated her body to her Dr so other Doctors can see how FOP attacks the body. Her zest for life was incredable and inspiration.

[@SessmaruKusanagiGaming]

😭😭 That's so friggen sad yet wholesome. These poor people..

[@janellafernandez6476]

My deepest condolences to her family, relatives, and friends

[@maamenuamah9453]

Wow, that's something

[@etherraichu]

@@maamenuamah9453 If you look it up, you can find pictures of her skeleton.

[@marybrown8905]

So did my cousin, Andy Sando. He was Nancy’s husband.

[@sparrow_solas]

Ayo she kinda bad tho

[@SirMemesLong]

bro....

[@sparrow_solas]

@@SirMemesLong Tell me you wouldn't hit, you lying

[@XSINITY]

ong😭😭

[@zacharysmith6634]

Stem cell research is a must now

[@user-kp4ii5eu2w]

@Marina Mansfield really good to hear that. I can’t wait to see how much stem cell research will aid people with various health conditions

[@hillaryhonde8425]

Religious people won’t allow it :(

[@Drakijy]

@@hillaryhonde8425 That was true up to a decade ago but now we (so-called religious people) know of the procedures medical professionals employ to harvest viable stem cells, in which they do not involve human embryos/fetuses/babies, so all is good. Get those stem cells replicating!

[@wmweeza]

@@Drakijy Yes there's research and treatments involving adult stem cells (not embryonic) so no religious issues :)

[@Thor.Jorgensen]

​@@Drakijy Adult human stem cells cannot compare to embryonic stem cells. There is nothing really to compare it to. We could discover so many more ways to save people from diseases such as this, prevent miscarriages, fertility issues, and birth defects but religious people still will not allow embryonic stem cell research. Heck, we know that we COULD cure Parkinson's disease if researchers were allowed.

[@kathy-leew3989]

Them having a dance party is the cutest thing ever 🥺 We humans need more spontanious dance parties

[@michaelmckinnon1591]

Kinda sadistic towards FOP sufferers though courtesy of the pain that accompanies the disease

[@pdorism]

@@michaelmckinnon1591 maybe it helps them stay "loose"... If I had this disease, I'd try to move in any possible position at least a couple of times a day.

[@uruha7341]

@@michaelmckinnon1591 ... no?? they want to do normal things that people able to move does, i'm sure they love to dance even if it hurts. i don't see it as a bad thing, they were having a great time

[@silence.9376]

*"The human brain is the most complex structure in the whole entire universe"* _-Human Brain_

[@sohyangworld1544]

Its complementing its self. 😂

[@OfTheForce]

🤣🤣

[@geographiq]

@@sohyangworld1544 lmao

[@missbelladonna24]

The human brain is an arrogant jerk 😏

[@drewdurnilappreciationday1680]

Reminds me of dictators giving themselves medals like hero of the people etc

[@rebeccashuman6199]

I can’t picture myself with FOP. How will I live? How will I survive? I feel bad for those unfortunate people

[@ssc4554]

God bless them

[@amyzamora9502]

They do survive...and they do it because they HAVE to. There's no choice but to!

[@prwildin223]

I feel bad

[@Dr_Mundo]

@@ssc4554 God cursed them.

[@yazzy8980]

@@Dr_Mundo wtf?

[@oscarpr8317]

This just reminds me not to say I’m having a worst day there’s people having a worse day

[@DJKHALED74629]

Worse live**

[@gmyers4967]

amen

[@PTS-Maid]

Just because these people have a disease that makes their lives miserable, doesnt mean we cant complain about our lives and feel like were having bad days. Two different things that dont have nothing to do with each other

[@ballstate2473]

@@PTS-Maid i can complain and all, but i should know i have it better than other people. Its not bad to realize that you have it better than others....

[@Heartagram_boy]

That’s the worst way to think, dude you can feel bad and have a terrible day, because you have feelings.

[@KingNemba]

Why does this world have to be this way. Proud of them to stay positive and move forward.

[@shineayandrews1869]

Because aliens hate us

[@gilbertsantacruz1397]

When we cross over I'm not sure if I want to come back so fast you just don't know what hand will be delt

[@zuziiice8907]

@@gilbertsantacruz1397 whatever is waiting must be a lot better than what we got going on earth. People got fop that physically makes your skeleton hard as a rock so i'm hoping at least for them there is blessings on the other side for living through this hardship.

[@omegalilbchass8270]

Life isn't made to be fair unfortunately

[@danielwilson7193]

I mean, our entire existence is really just a fluke.

[@joffles6516]

Was that tutorial on removing pants really necessary

[@gealt7017]

It shows it can happen to anyone at any age ☹️

[@lovecaleighjeanine5101]

Yeah a born genetic.

[@2012XF3]

Nah just white people.

[@Mei-em4qk]

2012XF3 Shhh.

[@lulnaii_]

2012XF3 so I guess I’m good😂😂

[@-amoureuse-9489]

2012XF3 did you not see the black girl at one part?

[@DevouredByADream]

Next time I start in feeling sorry for myself over something silly or want to give up; I will remind myself of these brave souls who have all of my admiration and respect.

[@Dede-lf6kz]

Amen

[@bobfaam5215]

They have no choice . It’s not about bravery . If I get it u will also have to learn to adjust

[@minalghubde9906]

True

[@jcepri]

I bookmarked this video for that reason. I feel like a moron complaining.

[@Nmt135-t2r]

AMEN

[@catezaida8081]

I cannot even imagine. God bless these brave souls.

[@mkimmick61]

God has cursed these souls.

[@ellaelliott4415]

This is why I don’t believe in god. What kind of god would allow people to suffer and die like this?! God’s plan needs some new blueprints…

[@sweetricecakeman8582]

@@ellaelliott4415 B-b-b-but god can't do wrong!!!!!!!111

[@ActionBastard88]

This proves there is no god

[@Johnny3Batony]

YHWH clearly blessed them allright.

[@swagosaurus144]

Hear me out let me cook The woman with the one arm though 👀

[@TheRealQuartz]

dude.

[@ouxu597]

ong

[@MrTrevortxeartxe]

My wife had CRPS, the world's most painful disease, I loved her with all my heart until her tragic and sudden death in early 2020. She was the strongest person I knew, and I will always love her.

[@Lianotube]

i wish u al the best❤

[@cayea4076]

God bless you.

[@Growgreen]

I’m sorry for your loss🙏🙏🥺

[@Candycrashxoxo]

@@asdfdsafasfdsadfasdfsadfdon’t be disrespectful

[@IdiotWashingMachine]

​@@asdfdsafasfdsadfasdfsadf Learn manners Mate.

[@tsuyumi4133]

I was so confused why the comments were so recent ;-;” its a flashback But still, god bless them

[@YoCreedgg]

Maybe because it was posting today 😐

[@tsuyumi4133]

ProCreedX thats why, I saw the old, original video and got confused

[@egg69420]

Ok I’m sorry for making this and I know it’s gonna get some hate but just imagine they got into a fight

[@melimelia2076]

YoCreed i thought this was years old lol

[@marble4533]

700 in the world... half of them in the US I'm sorry but that sounds like a job for scientists to figure out why it occurs in the US so much more....

[@AlexisMunoz82]

I was diagnosed with Transverse Myelitis at the age of 14. I may have spent the last 25 years in a wheelchair and unable to walk, but it's NOTHING compared to this. My heart aches for you guys but I know you're stronger than I could ever be!

[@polemius01]

You have empathy to other people! That is great strength!

[@rcbrothers1000]

Same here, i have been battling with Ankalosing Spondylitis for 6 years. The condition fuses the spine together. No where near as bad as these people. My heart goes out to everyone battling a condition.

[@stardustgirl2904]

When Jesus Christ returns one day, he will heal the world 🌎 and it's people! 🙏🏻🙏🏼🙏🏾💜🙏🏿 God loves his children!

[@mohamednimal4345]

❤️👏👏

[@uttkarshsuri553]

Power to you man ❤️

[@RHTQ1]

The story about the lady who works as a dispatcher is pretty inspiring: find what you can do to help the world

[@teijaflink2226]

Yeah a great way she has found to serve.

[@kimbleeblob]

And the way her husband looks at her.. I'm in freaking tears from that alone.

[@darfoz8807]

100%

[@pablobecerra1995]

Omg 😔 this breaks my heart but I'm glad that they're positive thinkers...

[@vegardJP]

Why do half of them live in USA? Just not very documented in other countries or what?

[@sarahs1849]

The fact that they're all DANCING in good spirits, having a blast together, says it all! Incredible people.

[@B31L]

Big L

[@asgi42ytr68yobxgdgj]

​@@B31L L + Jealous + No friends

[@B31L]

@@asgi42ytr68yobxgdgj youre asian L

[@ChickenFerLei]

I grew up with a girl who has FOP. I never knew what it was until we got older and she shared info about her disease. You can clearly tell her body has limited movement and she can barely walk. She looks stuck. They told her she wasn’t going to live past 10 and here she is 32 years old! But she lives a good fun life and has many friends and family that love her!

[@tavlogs6420]

The fact that they all crafted their own unique devices to overcome obstacles is amazing

[@B31L]

Big L

[@EliHank]

Welp, looks like I'm done complaining about my chronic shoulder pain

[@lspellslogic877]

I wish there would be a cure to every disease soon Seeing people suffer breaks my heart

[@codyrw8397]

DEATH

[@testsubjectt001]

@@codyrw8397 Damn who hurt you cody?

[@codyrw8397]

@@testsubjectt001 Sorry, watching people in pain makes me angry at the world! Peace

[@MainStreetElectricalParade]

Normally makes me laugh cuz I don't like people. But this is beyond overkill. These poor people:(

[@JohnJohn-bz1lq]

Yeah it’s called breaking the bones

[@psychedelicpsycho]

My friend in high school actually had this! It wasn’t as severe but his wrists were fused and could do most things pretty normally but had no rotation. Amazing to see everybody come together like that! They May be “disabled” but they aren’t going to let nothing stop them and that’s soo inspiring!

[@googlename7943]

how is he now?

[@bea-hindyou]

I would also like to know how he is doing to

[@psychedelicpsycho]

@@googlename7943 he’s doing awesome! We’re from Pa and he’s was actually quite a shy guy but he moved out to Colorado and is living his life to the fullest! We don’t talk as much now but I’m always seeing him posting pictures on Facebook of him out riding bikes and fishing and snowboarding. It’s pretty inspiring actually seeing him live life! Makes you really think about life! But I’m absolutely Proud of the man he became that’s for sure!

[@psychedelicpsycho]

@@bea-hindyou .

[@googlename7943]

@@psychedelicpsycho that's so great to hear!!! God bless him and you fir being nice to him.

[@Big-Papa-Smurf]

Hear me out though.

[@Snot69420]

I mean what's she gonna do? run away with both her legs?

[@diordomain2630]

I thought her whole arm was edited out 💀💀💀

[@ly07e]

Oml same i tought they photoshopped the picture at first i said the person who tried to edit the pic was bad at it than i found out that it wasnt photoshopped

[@boperez2841]

Sameeee

[@randomguy4781]

same. from the thumbnail I thought it was photoshop.

[@nadiaformica7722]

Me to for like 1 millisecond

[@cindyrogofsky251]

Me too.

[@donnapuckett4992]

I have a good friend in Australia who has this terrible disease and it breaks my heart to see anyone go through this nightmare.

[@whatclub3934]

Hope you and friends help him through that! Love from Texas

[@jaheimw.b.2517]

I hope he's living his life to the fullest

[@philippamediwake1235]

I’m so happy that those husbands saw through the disease & love their wives unconditionally ❤

[@irshviralvideo]

I agree but i also think that these individuals should not procreate so that this genetic disorder doesnt propagate.

[@stallionstudios]

Indeed!

[@colruytgaming8365]

I love how its always the disabled woman who have a husband God damn men have it hard...

[@LordHorst]

Sure. Because no disabled man ever had a wife... what an incredibly stupid thing to say.@@colruytgaming8365

[@haleyt3754]

@@colruytgaming8365you have to be playing dumb right

[@Hybred]

Hearing Kathy talk about how she thought no one would love her because of her disease and how she found someone who did is very sad and telling. Not only does this create physical problems but issues in your love life, imagine how depressing and lonely, most of these people never find a partner.

[@dnegel9546]

How you get that font for username?

[@spacefalls8260]

@@dnegel9546 look up copy paste font

[@MetsuNoShin]

@@foteinimanou5516 just maybe, humanity is stronger off for having those people.

[@UBvtuber]

@@foteinimanou5516 As politically incorrect as it is to say that: this is a valid concern and we shouldn't just dismiss it because it might be hurtful to say. Life itself can be hurtful, it hurt these people by giving them one of the most horrifying diseases imaginable and the last thing humanity needs is more of this

[@cherubvomit]

Life’s happiness dosent revolve around getting married. these people seem happy just chillen with their friends and family who respect them. they dont need a significant other to make their lives complete. Life isnt just about getting married. ☹️

[@lulbaby_1626]

I feel bad for them, and there's prob someone watching this laughing :/

[@fullsendmountainbiker5844]

I’ve never taken my normally functioning body for granted and I never will. I admire these people for managing to live to their fullest potential, an lead a somewhat normal life and find solutions to their everyday struggles. I can’t imagine what it must be like. Wishing them nothing but the best from the uk ❤

[@BossQueen]

*I'm crying. So grateful to God right now.* 😢

[@JudgeDredd_]

True I didn’t even know this was a thing. Crazy to think that any of us were born healthy to begin with considering all that could go wrong.

[@whiteboyemiliano5566]

So you weren’t grateful to god before this?

[@daryl9678]

God doesn’t exist

[@sirintornstantripop788]

dirt he doesn’t exist to me either. Sorry

[@DanielW607]

God isn’t real

[@gjk540]

These poor people. They must be in so much pain.

[@somethingsomethingdarkside9618]

These poor angels. 💕

[@ButterBiscuitGobbler]

*Angels

[@somethingsomethingdarkside9618]

@PizzaGut Omfg lol.

[@Adeerma-t3k]

I can't stop crying... Because I'm definitely going to hell.

[@gameryusic825]

The two guys earned my respect. They fell in love with someone because of their personality Pushing aside the fact they had a disease that may be troublesome for them.

[@Vega_Sports]

My uncle passed away from this disease. It took his freedom from him slowly. It was so painful to watch. I miss him so much. I pray everyone reading this and in this video finds peace and happiness ❤️

[@ashesflipflop]

Who was your uncle ??

[@Injinct]

If this is real that's sad but i feel like u aren't being honest. 700 in a billion chance that this comment is true which is low.

[@elouise5593]

So sorry for your loss! Hugs!

[@anxmor8619]

Y que enfermedad es??

[@gilbertokoxx3559]

@@Injinct ??? and why couldn't a relative of someone who had this disease come to a video ABOUT THE GODDAMN CONDITION to tell their story? Couldn't 2K_VEGA, you know, search KZbin for videos on the disease his/her uncle suffered from? Be a little reasonable, will ya?

[@becca2938]

I love how these individuals still find a way to keep themselves happy, watching them all laugh and dance as best as they could made me smile. I know it's a rough road and I wouldn't wish it on anyone, but I am so proud to be on the same planet as these people. They make me more hopeful for the human race.

[@logan4215]

Same. It makes the "what if your baby has a horrible disfigurement" argument from the evil pro-aborts so much worse.

[@safinhh8312]

indomitable human spirit

[@MarioMartinez-tt9ly]

I’m sorry but living like this I would rather die and get it all over with .

[@Lkymn]

I'd love to have a chat with one of these people about their favorite books, movies, music. It's easy for someone's illness to become their defining trait.