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.
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.
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.
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?
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.
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...
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.
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.
@@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
“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.
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...
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
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.
@@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."
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
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.
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.
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
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.
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?
@@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.
@@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.
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
@@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
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
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
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.
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.
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.
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.
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.
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.
My dad died of ALS after 3 long years and I thought that was the worst disease you could get. Seeing this makes me miss him so much and feel so terribly for those going through this.
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!
@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.
@Riri 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
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!
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.
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 ❤
@@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.
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
@@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.
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.
I'm 41 and healthy as any friend around my age. This reminds me to be gracious for that fact. So glad this affliction was handled with so much optimism. I can't say I could do the same. Bless you all.
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.
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 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!
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.
@@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
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. ☹️
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!
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
@@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....
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.
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.
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?
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.
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.
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 ❤️
@@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 RUclips for videos on the disease his/her uncle suffered from? Be a little reasonable, will ya?
Out of all these FOP patients, my heart goes out to Ashley who lost her arm and shoulder in a surgery that should have never happened because she was misdiagnosed and the surgeon thought it was an agressive tumor rather than FOP, which I saw on Mystery Diagnosis. What was really upsetting is that FOB was obvious at birth because of her two big toes. Ashley was told when diagnosed at a very young age with FOB after the amputation that she would live for 2-10 years and not she is defeating the odds as she is now in her 30s. This proves that FOB doesnt have to be a death sentence. You can live a shortened but decent life with FOP
@@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!
@@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.
I have a lot of issues, Marfan syndrome, autism, adhd, ocd, anxiety ptsd and watching these people with a more debilitiating disease and still go on with life having dignity and strenght makes me fell not so alone.
@@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.
@@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
This has me crying like a baby. God bless everyone on this video and all the strength they have. I’m a nurse and see a lot and people never cease to amaze me. 🙏🏽
The woman with the missing arm did a video for Special Books by Special Kids, I think, about a year or two ago. She's totally bed bound now. She spends her whole day lying on her side on a memory foam mattress, barely able to do anything on her own.
I cannot even begin to describe how much I admire these people and their strength.
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.
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.
the thumbnail of this video looks like the woman's photo being edited and cropped out in part
I gotta be thankful
Im your 3.5k like
Be grateful for your health. Use it to accomplish your goals and do good
Jeez
Dwaine Woolley .l
I’m a big fan
I will lad, I will...
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.
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?
100% agree.
i agree, the outcome is the same for everyone so its best to live life at its fullest!
They sure keep a stiff upper lip!
no
Definitely though hopefully someday science will be advanced enough to prevent/cure things like this
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.
Am i a bad person if i laugh constantly
@@DL84I would question that
@@DL84yes
@@DL84 Mostly just sad and cringy to laugh. Or some attempt at 2007 edgy humor.
It's really inspiring how positive they remain. I think that's the part that's really touching.
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...
does he go to the fop convention? maybe he would like it
Mega Cap
1 of 800? I'm so sorry.
@@sleepingstudios4478 and you think this because?
@@john-h4k6m it’s paralysis not this disease
That thumbnail doesn't even look real.. like someone took an eraser in photoshop to her.
Heartbreaking.
I’m going to hell for laughing when I read your comment
Anthony Valles 😂
@@Kingvalles see u there 😩😩
it actually sad:( i thought it was photoshop :(
looks like doodle bob started erasing her
I couldn’t imagine living like that. I give all my condolences to them
I couldn't live like that either! I would want to be euthanized
Save some for later💀
Ikr i would be so depressed if i had to live like that... I give all of my condolences to them
They have had this problem since childhood they don’t know any different 😒
It’s like a statue
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.
Wow really?
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.
@@VaultYT. yep, i was the school
Did u get the FOPussy?
i am also a school and I am really feeling you rn@@Snot69420
Its really sad that there is not a cure for this....praying for all those people
》Venom《 - maybe one day we’ll find a cure :)
joek money did you just say the SYNDROME was man made? Or am I mistaken and you said the cure was man made?
No money in a disease affecting a small number of people. Companies wont invest for research for small potential returns.
Maybe surgery where they remove the bone but something like that will probably happen In 2100
@@mrowll.7587 they already do that but the bone that was removed grows back twice as fast sadly
When you think your life is the worst, think about these good hearted people with bodies literally turning to bone
Yeah, damn
@Bodhi he’s saying you can’t complain about your life to others because there will always be people in worse situations than you
@Bodhi How am I brushing off other peoples lives???
@@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
@@ChinaWhiteChinaWhite thank you
“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.
@bell c@t that is true my friend.
@bell c@t Why doesn't he cure them now, so they can enjoy life?
Yeah God bless... what a blessing
@bell c@t reasonable
God bless these people? If God was real, he wouldn't allow them to be in this position in the first place.
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...
Sometimes I complain about my health problems. I watch these videos to remind me that I can go though anything even if it can overwhelming at times
I love that doctor. You can tell he really wants to help these people.
its might be rare but its hell on earth, hopefully he finds a cure for the disease soon! bless this man
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
And all he did was to take himself pictures
He about to do experiments on them
Big L
Can you imagine being misdiagnosed and someone takes a machete to your arm.Sad
MrMelgibstein i don’t know how people amputate but I don’t think a machete is used
@@auxiliomedesmayocallesevie1718 in some places
Løcø•Cøcøa i lmao pinché girl lol jkjk
What’s even sadder is amputation makes movement go quicker so those doctors could literally have taken years off her life
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
That is why one shouldn’t take anything for granted....always be grateful of what you have because you never know what may happen.....
who knows, next thing you know you unexpectedly loose ur legs due to a car accident and now you can't walk anymore
I take everything for granted
yes! even if it just scratching your eye , some people can’t even do just that ,
Nobody ever takes notice of their ability to walk, talk and move. Even the little things can disappear.
AMEN
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.
Seems more like god cursed them.
Why did God give them this?
@@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."
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
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.
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.
Couldn’t hold back the tears when I saw the 3 year old
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.
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
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.
Yeah I agree but that lady is normal like everyone else
Ya i feel so Bad ༎ຶn༎ຶ
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?
@@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.
@@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.
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
Mannnnn 😢
And all it took was looking at her damn toes 💔
medicine is not so simple especially in these genetic diseases. the doctors had the best intention at the time
@@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
Man, turning into a statue+ a lost arm due to misdiagnosis
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
I feel terrible for these people, no one should have to live like that. 😞
Yeah this is incredible distressing to watch.
@Larry Putra 1:12 got me bricked up 😘
@@nuclear9977 👀
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
Donald Trump Jr.
I started crying after they showed the 3 year old kid having fun and dancing with another kid.
Me too. He reminded me of my nephew. 😔
♥️
Same 🥺🥺
why? that's not your problem
@Krazy Guy 😐
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.
I agree
You have every right to complain. How bad somebody else feels don't make your problems insignificant.
Benner Yes it does, you have no grounds to complain when people like these exist
@@YOTSUBA_desu False, and what you said constitutes a fallacy known as the "fallacy of relative privation."
@@shirin8609 yeah, I think they’re trying to say that they shouldn’t think they have the worst life ever or something.
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.
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.
😭😭 That's so friggen sad yet wholesome. These poor people..
My deepest condolences to her family, relatives, and friends
Wow, that's something
@@maamenuamah9453 If you look it up, you can find pictures of her skeleton.
So did my cousin, Andy Sando. He was Nancy’s husband.
I hope there's a cure soon, I can't imagine going through that everyday, they're so frickin strong, God bless
how does she use the bathroom though
@@eli_xikmqq4104 probably have a caretaker and use a bedpan
@@eli_xikmqq4104 maybe don't think about that
"God bless"? Yeah, I guess this is definite proof of *Sky Daddy's* love all right.
@@jimscanoe The internet wouldn't be the same without the occasional entitled atheist.
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.
@Barry Midikiner GTFO
Thanks god for giving these people this condition ur the best 🙏
She actually goes to my church, I didn’t know she had this disease
Zakaria Ogle you ok man?
I read this as she said it.
I cried constantly while watching, both from sadness and happiness. It's so wonderful to see good people loving and caring for these people.
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
I know it must suck :(
Sleep paralysis
Getting stuck in a washing machine head first is much more scarier...
@@RentFreeInsideYourDamnHead dude, its nowhere close
@@doomslayer8431 only temp sucks
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.
👌🏿
He’s only 57... didn’t you watch the video??
@@amandacharlebois9295 she means at 3:32
I’m actually crying, that’s love right there.
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.
I can't imagine how painful this is....and it seems to just get worse and worse. Heartbreaking.
Mentally painful 😭
@@JupiterVortex especially, yes. 😥
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.
i wish u al the best❤
God bless you.
I’m sorry for your loss🙏🙏🥺
@@asdfdsafasfdsadfasdfsadfdon’t be disrespectful
@@asdfdsafasfdsadfasdfsadf Learn manners Mate.
My heart breaks for them. They have incredible strength, but what a horrendous card to be dealt. Life just is not fair.
Not fair at all smh I hate this world
Yup, God exist in this world, yup. God Bless!
You said break because you also thought about breaking the bones too
That's why don't take your bodies for granted and take care of yourselves.
@@squirrel8121 god 😂
My dad died of ALS after 3 long years and I thought that was the worst disease you could get. Seeing this makes me miss him so much and feel so terribly for those going through this.
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!
That’s why we have to be grateful for everything because not everyone has the same opportunities that we do.
@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.
@Riri remember some people have it way worse than you
Yeah them homeless people should be damn grateful
@Riri 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
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!
You have empathy to other people! That is great strength!
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.
When Jesus Christ returns one day, he will heal the world 🌎 and it's people! 🙏🏻🙏🏼🙏🏾💜🙏🏿 God loves his children!
❤️👏👏
Power to you man ❤️
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 ❤
I can’t imagine having something like this, god bless them all 💞
well, u can still know what something is like without going through it
Omg ur profile pic teehee
@@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.
Screw your profile picture
pop bob who's
I hate that misdiagnosis took her arm that she so desperately needed
It wouldn't have mattered
@@radpan9642 yes it would… Her having another arm could at least help her with her daily tasks.
yes she needs 2 arms for ACTIVITIES -,Daily. but she does pretty Darn GOOD
@@Saffins llllllll
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
This is a sad condition
Same
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
You shouldn't pity on them you should encourage them
@@Ewee689 in fact. Look at the one who does not have an arm, she put her makeup on using scissors. So much corageous!
666 likes
Their strength is inspiring. Wishing them peace and love.
This shows that it’s good to appreciate what you have.
Boi
Yea
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
The 3rd one I saw so far that said this, just let people live...
Why does this world have to be this way. Proud of them to stay positive and move forward.
Because aliens hate us
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
@@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.
Life isn't made to be fair unfortunately
I mean, our entire existence is really just a fluke.
Dang I wish I could just take these people disease away
Ikr so sad I really wish I could have powers to take away all of these ppls diseases away🥺😔
Thank goodness we may eliminate all disease by the next 100 years or less.
Same
@LeilaTheBird not really
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.
I'm 41 and healthy as any friend around my age. This reminds me to be gracious for that fact. So glad this affliction was handled with so much optimism. I can't say I could do the same. Bless you all.
Blessings to all these people and the little angels. Please find a cure.
Agree
No cure for this
The fact that they're all DANCING in good spirits, having a blast together, says it all! Incredible people.
Big L
@@B31L L + Jealous + No friends
@@asgi42ytr68yobxgdgj youre asian L
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.
Amen
They have no choice . It’s not about bravery .
If I get it u will also have to learn to adjust
True
I bookmarked this video for that reason. I feel like a moron complaining.
AMEN
This once again shows that humanity is beautiful and that people can overcome all adversity!
I can’t picture myself with FOP. How will I live? How will I survive? I feel bad for those unfortunate people
God bless them
They do survive...and they do it because they HAVE to. There's no choice but to!
I feel bad
@@ssc4554 God cursed them.
@@Dr_Mundo wtf?
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!
how is he now?
I would also like to know how he is doing to
@@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!
@@bea-hindyou .
@@psychedelicpsycho that's so great to hear!!! God bless him and you fir being nice to him.
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.
How you get that font for username?
@@dnegel9546 look up copy paste font
@@foteinimanou5516 just maybe, humanity is stronger off for having those people.
@@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
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. ☹️
I didn't know this existed. But I am so sorry for them. Amazing how so many show such happiness and enthusiasm.
The story about the lady who works as a dispatcher is pretty inspiring: find what you can do to help the world
Yeah a great way she has found to serve.
And the way her husband looks at her.. I'm in freaking tears from that alone.
100%
I have a good friend in Australia who has this terrible disease and it breaks my heart to see anyone go through this nightmare.
Hope you and friends help him through that! Love from Texas
I hope he's living his life to the fullest
I thought someone photoshopped the thumbnail wrong...
Me too!!
But sadly it's a real disease
Me too
And it’s all because of a misdiagnosis that’s crazy...
Jam Hopsey most doctors always due that as an excuse to torture patients
This brought tears to my eyes, I feel so bad for these people. I hope they have someone who has a good heart to help take care of them.
I cannot even imagine. God bless these brave souls.
God has cursed these souls.
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…
@@ellaelliott4415 B-b-b-but god can't do wrong!!!!!!!111
This proves there is no god
YHWH clearly blessed them allright.
This is honestly heartbreaking for these people. I feel so bad for them.😭😭😩😩
Yeah I dont think i would continue my life if i have that disease, bless those people..
same this is sad 😞
It dat cheemss
600th comment like 😎
God bless them
But god made them
looks like they hadn't
SGG exactly. God made them, and God doesn’t make mistakes.
Medicinal Blood then your life is meaning less
Pixell if the World was perfect how do you separate the good people from the bad
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!
this is so terrible. what an awful nightmare and they're smiling through it all. the strength of the human spirit shining through
The fact that they all crafted their own unique devices to overcome obstacles is amazing
Big L
This just reminds me not to say I’m having a worst day there’s people having a worse day
Worse live**
amen
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
@@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....
That’s the worst way to think, dude you can feel bad and have a terrible day, because you have feelings.
I'm never complaining ever again....
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.
Geez who trained the doctor? Who misdiagnoses somebody so bad that they lose their arm for no reason?
The consequences of ignorance.
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.
It is called "practice" for a reason.
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?
Its a RARE disease...doctors dont see this eveyday so how about you give him a break?
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.
Same. It makes the "what if your baby has a horrible disfigurement" argument from the evil pro-aborts so much worse.
indomitable human spirit
I’m sorry but living like this I would rather die and get it all over with .
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.
Damn, this has to be one of the worst diseases I’ve seen
Bro this is the worst.
cancer is the worst
I'm almost blind, so I know how it feels to be different. Much love to these people. Life is worth living even with a disability / disease.
Wait a min if u almost blind how did you wrote the comment
@@purple.willow1 With the remaining % of my eyesight. It's not much, but enough to use a computer or a phone.
@@purple.willow1 💀
@@purple.willow1probably speech to text or help from a relative.
Wishing you the best from the uk 💕
People that live this way and still have such a hopeful spirit and genuine happiness is something we should all learn from.
“ God has given me the ability to find the joy in the little things in life” I will never complain about my problems again. 🙏 ❤️
I know how you feel. I watched this and realized I don't have any reason to complain about anything.
God froze their asses lmao
Sure you will, but if you remember her outlook on life it can help you to be more grateful for what you do have ❤️
Your said a mouth full. WoW. This is by far one of the worst diseases I have ever heard of.
@@krissianvictir1291 That ain't very funny.
Wow. I’ve never even heard of this. So heartbreaking, but also watching them all make the best of their lives. Very remarkable.
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 ❤️
Who was your uncle ??
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.
So sorry for your loss! Hugs!
Y que enfermedad es??
@@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 RUclips for videos on the disease his/her uncle suffered from? Be a little reasonable, will ya?
I wish there would be a cure to every disease soon
Seeing people suffer breaks my heart
DEATH
@@codyrw8397 Damn who hurt you cody?
@@testsubjectt001 Sorry, watching people in pain makes me angry at the world! Peace
Normally makes me laugh cuz I don't like people. But this is beyond overkill. These poor people:(
Yeah it’s called breaking the bones
6:03 was one of the most wholesome things I've ever seen
Out of all these FOP patients, my heart goes out to Ashley who lost her arm and shoulder in a surgery that should have never happened because she was misdiagnosed and the surgeon thought it was an agressive tumor rather than FOP, which I saw on Mystery Diagnosis. What was really upsetting is that FOB was obvious at birth because of her two big toes. Ashley was told when diagnosed at a very young age with FOB after the amputation that she would live for 2-10 years and not she is defeating the odds as she is now in her 30s.
This proves that FOB doesnt have to be a death sentence. You can live a shortened but decent life with FOP
The couples.... those hit me right in the heart.... the true love they feel for each other makes me tear... very very sweet.
same here. it is so hard to see such a kind soul have to endure so much. i’m so glad they have each other. it’s beautiful.
Bruh when I saw the kids I literally wanted to. Cry
same.
@@mircocapra4531 This is NOT funny.
@@mircocapra4531 No.
@@snoopypajamapants WHAT is IT?
@@Palestine-h7z faking dumb things
Omg 😔 this breaks my heart but I'm glad that they're positive thinkers...
This made me smile in a tone where my heart breaks for my little girl n man's best friend Holley who is super sick. Thank you for making me smile
Stem cell research is a must now
@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
Religious people won’t allow it :(
@@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!
@@Drakijy Yes there's research and treatments involving adult stem cells (not embryonic) so no religious issues :)
@@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.
These people understand hardship, empathy, and perseverance in a way that I never could.
Big L
@@B31L ???
@@Periwinkleaccount big L
@@B31L Whose big L is it?
the human will is insane no matter the situation its usually well at adapting to bad circumstances
These poor people. They must be in so much pain.
I have a lot of issues, Marfan syndrome, autism, adhd, ocd, anxiety ptsd and watching these people with a more debilitiating disease and still go on with life having dignity and strenght makes me fell not so alone.
I’m so happy that those husbands saw through the disease & love their wives unconditionally ❤
I agree but i also think that these individuals should not procreate so that this genetic disorder doesnt propagate.
Indeed!
I love how its always the disabled woman who have a husband God damn men have it hard...
Sure. Because no disabled man ever had a wife... what an incredibly stupid thing to say.@@colruytgaming8365
@@colruytgaming8365you have to be playing dumb right
Them having a dance party is the cutest thing ever 🥺
We humans need more spontanious dance parties
Kinda sadistic towards FOP sufferers though courtesy of the pain that accompanies the disease
@@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.
@@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
That lady says she looks for the little joys in life. She's amazing. Something we all need to do, regardless of our situation.
This is so sad. Glad these people all have each other.
They’re all incredible people with some of the strongest wills I’ve ever seen.
Never heard of FOP’s before, so glad then friends have each other, seem like a lovely & supportive bunch x
This has me crying like a baby. God bless everyone on this video and all the strength they have. I’m a nurse and see a lot and people never cease to amaze me. 🙏🏽
Ashley was just on sbsk and she’s totally bedridden now :( I hate that people have to go through this.
What a cruel cruel disease! They’re amazing with their strength. Much love to them 🙏🏻🙏🏻❤️
3:33 I love their ability to still rock out and have fun.
My dude in the wheelchair vibing like it's nothing.
these people will be stronger than I will ever be
I heard Nelson's laugh in the background from The Simpsons
@@imlowercasebtwalso , no that was Michael Jackson's song Don't Stop Till You Get Enough.
It shows it can happen to anyone at any age ☹️
Yeah a born genetic.
Nah just white people.
2012XF3 Shhh.
2012XF3 so I guess I’m good😂😂
2012XF3 did you not see the black girl at one part?
The woman with the missing arm did a video for Special Books by Special Kids, I think, about a year or two ago. She's totally bed bound now. She spends her whole day lying on her side on a memory foam mattress, barely able to do anything on her own.