How People With FOP Live As Disease Turns Bodies Into Bone

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  • Опубліковано 15 тра 2020
  • 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

КОМЕНТАРІ • 10 тис.

  • @CrImSoN1708
    @CrImSoN1708 4 роки тому +10328

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

    • @anthonyvalles4386
      @anthonyvalles4386 4 роки тому +470

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

    • @xdescend_
      @xdescend_ 4 роки тому +42

      Anthony Valles 😂

    • @mzgymeni
      @mzgymeni 4 роки тому +101

      @@anthonyvalles4386 see u there 😩😩

    • @MwSama
      @MwSama 4 роки тому +162

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

    • @michelleversace6030
      @michelleversace6030 4 роки тому +66

      looks like doodle bob started erasing her

  • @MrMelgibstein
    @MrMelgibstein 4 роки тому +5631

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

    • @auxiliomedesmayocallesevie1718
      @auxiliomedesmayocallesevie1718 4 роки тому +301

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

    • @DejitaruKari
      @DejitaruKari 4 роки тому +36

      @@auxiliomedesmayocallesevie1718 in some places

    • @drawbootiful8665
      @drawbootiful8665 3 роки тому +4

      Løcø•Cøcøa i lmao pinché girl lol jkjk

    • @esmegrant8442
      @esmegrant8442 3 роки тому +75

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

    • @nickrufo1979
      @nickrufo1979 3 роки тому +54

      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

  • @yourmaster888
    @yourmaster888 9 місяців тому +636

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

    • @connordendy
      @connordendy 16 днів тому +4

      My brother tried to do good and accomplish his goals and he ended up getting tuberculosis because of a gang in Mexico after he helped a homeless man

    • @Infinitzz1
      @Infinitzz1 10 днів тому +1

      @@connordendyhow is he doing now ?

    • @ITSFALLIXIX
      @ITSFALLIXIX 3 дні тому

      @@connordendyo damn is he okay?

    • @connordendy
      @connordendy 2 дні тому

      @@ITSFALLIXIX he’s dead

    • @ITSFALLIXIX
      @ITSFALLIXIX 2 дні тому

      @@connordendy oh omg I’m so sorry for your loss,that must have been very hard for you

  • @glen4326
    @glen4326 Місяць тому +287

    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.
      @VaultYT. Місяць тому +2

      Wow really?

    • @Syntappi
      @Syntappi 8 днів тому +3

      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
      @Snot69420 4 дні тому

      @@VaultYT. yep, i was the school

  • @DwaineWoolley
    @DwaineWoolley 3 роки тому +34203

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

    • @casey6649
      @casey6649 3 роки тому +102

      Jeez

    • @jana-mb6si
      @jana-mb6si 3 роки тому +22

      Dwaine Woolley .l

    • @jana-mb6si
      @jana-mb6si 3 роки тому +24

      I’m a big fan

    • @dexterkiwibird1745
      @dexterkiwibird1745 3 роки тому +55

      I will lad, I will...

    • @PaoloCanada
      @PaoloCanada 3 роки тому +76

      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.

  • @star.set76
    @star.set76 2 роки тому +13595

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

    • @KhreamedKhorne
      @KhreamedKhorne 2 роки тому +170

      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
      @brandonforrester7342 2 роки тому +25

      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
      @MTC008 2 роки тому +10

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

    • @andyramirez470
      @andyramirez470 2 роки тому +3

      I gotta be thankful

    • @KillerBeanG
      @KillerBeanG Рік тому +1

      Im your 3.5k like

  • @apacolypz11
    @apacolypz11 9 місяців тому +618

    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
      @DL84 6 місяців тому +2

      Am i a bad person if i laugh constantly

    • @doomguydemonkiller
      @doomguydemonkiller 5 місяців тому +3

      @@DL84I would question that

    • @michaelmyers3061
      @michaelmyers3061 5 місяців тому +10

      ​@@DL84yes

    • @davedanger4414
      @davedanger4414 4 місяці тому +9

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

    • @panner11
      @panner11 3 місяці тому +4

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

  • @tankthomus
    @tankthomus 8 місяців тому +252

    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
      @Ett.Gammalt.Bergtroll 5 місяців тому +9

      Seems more like god cursed them.

    • @hannemanisunderrated5610
      @hannemanisunderrated5610 Місяць тому +3

      Why did God give them this?

    • @marasmusine
      @marasmusine День тому +1

      @@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."

  • @bekahhooper9852
    @bekahhooper9852 4 роки тому +5322

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

    • @ricekrispyy
      @ricekrispyy 4 роки тому +35

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

    • @edee.
      @edee. 4 роки тому +21

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

    • @kellan9758
      @kellan9758 3 роки тому +8

      you know whats more sad, there is children

    • @vinhnham7400
      @vinhnham7400 3 роки тому +34

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

    • @mrowll.7587
      @mrowll.7587 3 роки тому +11

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

  • @treysf4154
    @treysf4154 3 роки тому +4818

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

    • @nealkelly9757
      @nealkelly9757 3 роки тому +24

      Yeah, damn

    • @schizogaming420
      @schizogaming420 3 роки тому +32

      @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
      @treysf4154 3 роки тому +10

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

    • @Neo-o
      @Neo-o 3 роки тому +126

      @@schizogaming420 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
      @treysf4154 3 роки тому +4

      @@schizogaming420 thank you

  • @wesleydonnelly2141
    @wesleydonnelly2141 Місяць тому +36

    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...

  • @nischalofchrist
    @nischalofchrist 10 місяців тому +69

    I shed a tear seeing those little children.

    • @armyochoa3933
      @armyochoa3933 12 днів тому

      Yeah when you get fop at a young age or any age you don't live that long you eventually die from heart failure

  • @mariateresitacortez2053
    @mariateresitacortez2053 2 роки тому +3929

    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
      @floridashenanigans1382 2 роки тому +38

      100% agree.

    • @ricplays5905
      @ricplays5905 2 роки тому +33

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

    • @bobhughes9628
      @bobhughes9628 2 роки тому +7

      They sure keep a stiff upper lip!

    • @rai_5454
      @rai_5454 2 роки тому +12

      no

    • @melynn_0355
      @melynn_0355 2 роки тому +18

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

  • @Leah_2112
    @Leah_2112 3 роки тому +5068

    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...

  • @AmericanRX
    @AmericanRX 7 місяців тому +59

    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.

  • @ray5357
    @ray5357 6 місяців тому +20

    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

  • @Morpeth_Harriers
    @Morpeth_Harriers 4 роки тому +9682

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

    • @grobanite4ever85
      @grobanite4ever85 4 роки тому +108

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

    • @arthurwaring
      @arthurwaring 4 роки тому +43

      Save some for later💀

    • @isabellascorner3442
      @isabellascorner3442 4 роки тому +108

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

    • @Esmerelda4
      @Esmerelda4 4 роки тому +43

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

    • @dhhdhdbxndb5300
      @dhhdhdbxndb5300 4 роки тому +4

      It’s like a statue

  • @crawdaddyy
    @crawdaddyy Рік тому +5140

    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
      @ohitsmookie2751 Рік тому +47

      Mannnnn 😢

    • @driskey82
      @driskey82 Рік тому +174

      And all it took was looking at her damn toes 💔

    • @icantfeelshitatall6285
      @icantfeelshitatall6285 11 місяців тому +88

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

    • @crawdaddyy
      @crawdaddyy 11 місяців тому +75

      @@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
      @patrick6210 10 місяців тому +22

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

  • @fullsendmountainbiker5844
    @fullsendmountainbiker5844 8 місяців тому +25

    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 ❤

  • @Midori_Hoshi
    @Midori_Hoshi 2 місяці тому +3

    I cried constantly while watching, both from sadness and happiness. It's so wonderful to see good people loving and caring for these people.

  • @Mugiwara2k
    @Mugiwara2k 2 роки тому +3665

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

    • @undeadhate944
      @undeadhate944 2 роки тому +62

      Yeah this is incredible distressing to watch.

    • @larryputra3692
      @larryputra3692 2 роки тому +24

      damn this world is crazy

    • @nuclear9977
      @nuclear9977 2 роки тому +12

      @@larryputra3692 1:12 got me bricked up 😘

    • @bea-hindyou
      @bea-hindyou 2 роки тому +9

      @@nuclear9977 👀

    • @Zeppelin616
      @Zeppelin616 2 роки тому +61

      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

  • @potaragaming4159
    @potaragaming4159 3 роки тому +2036

    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
      @eli_xikmqq4104 3 роки тому +8

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

    • @miguelmiguel123123
      @miguelmiguel123123 3 роки тому +1

      I take everything for granted

    • @jjzzaabbyyco6383
      @jjzzaabbyyco6383 3 роки тому +1

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

    • @hypiransio4451
      @hypiransio4451 3 роки тому +5

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

    • @sgdgsc3236
      @sgdgsc3236 3 роки тому +1

      AMEN

  • @jonathanbuyno9461
    @jonathanbuyno9461 7 місяців тому +6

    Their strength is inspiring. Wishing them peace and love.

  • @danopdyke747
    @danopdyke747 3 місяці тому +5

    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.

  • @blondechick9804
    @blondechick9804 3 роки тому +4479

    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
      @Anna-346 3 роки тому +27

      Yeah I agree but that lady is normal like everyone else

    • @idgaf8266
      @idgaf8266 3 роки тому +5

      Ya i feel so Bad ༎ຶn༎ຶ

    • @johntucker3695
      @johntucker3695 3 роки тому +19

      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
      @blondechick9804 3 роки тому +31

      @@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
      @johntucker3695 3 роки тому +15

      @@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.

  • @neonlights3739
    @neonlights3739 2 роки тому +3375

    “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.
      @JessASMR. Рік тому +4

      @bell c@t that is true my friend.

    • @screamingpencil
      @screamingpencil Рік тому

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

    • @mavisgrace5403
      @mavisgrace5403 Рік тому +9

      Yeah God bless... what a blessing

    • @mavisgrace5403
      @mavisgrace5403 Рік тому

      @bell c@t reasonable

    • @shaqyardie8105
      @shaqyardie8105 Рік тому +30

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

  • @trinity2145
    @trinity2145 7 місяців тому +3

    Wow. I’ve never even heard of this. So heartbreaking, but also watching them all make the best of their lives. Very remarkable.

  • @acerodriguez6884
    @acerodriguez6884 8 місяців тому +1

    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

  • @JaytheP
    @JaytheP 2 роки тому +3013

    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
      @jd_kreeper2799 2 роки тому +63

      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
      @sarah2.017 2 роки тому +56

      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
      @DiegoRodriguez-cs1ow 2 роки тому +20

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

    • @DespairKarma
      @DespairKarma 2 роки тому +16

      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
      @vinnythevagguy 2 роки тому +19

      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

  • @marleywenzel3207
    @marleywenzel3207 3 роки тому +2998

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

    • @BazamO
      @BazamO 3 роки тому +194

      The consequences of ignorance.

    • @kmarshirley
      @kmarshirley 3 роки тому +470

      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
      @Drakijy 3 роки тому +41

      It is called "practice" for a reason.

    • @michaelbujaki2462
      @michaelbujaki2462 3 роки тому +196

      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
      @Bignfluffy 3 роки тому +71

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

  • @voiceguy554
    @voiceguy554 10 місяців тому

    Massive Respect! Instead of playing victim these guys plough ahead with their lives! God Bless you!

  • @Dennis_Reynolds_Golden_God
    @Dennis_Reynolds_Golden_God 8 місяців тому +1

    I admire their strength and resilience. Seeing this gives me one more thing to be thankful for.

  • @dianawright8334
    @dianawright8334 2 роки тому +1342

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

    • @radpan9642
      @radpan9642 2 роки тому +5

      It wouldn't have mattered

    • @Saffins
      @Saffins 2 роки тому +265

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

    • @carolnahigian9518
      @carolnahigian9518 2 роки тому +16

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

    • @yswnova
      @yswnova 2 роки тому +2

      @@Saffins llllllll

    • @aniahliepard
      @aniahliepard 2 роки тому +5

      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

  • @david894
    @david894 3 роки тому +2319

    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
      @khadiah5486 3 роки тому +9

      I agree

    • @benner1320
      @benner1320 3 роки тому +153

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

    • @YOTSUBA_desu
      @YOTSUBA_desu 3 роки тому +9

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

    • @shirin8609
      @shirin8609 3 роки тому +93

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

    • @Crinkfries
      @Crinkfries 3 роки тому +14

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

  • @ItzDrPlow
    @ItzDrPlow 9 місяців тому +1

    this is the TRUE DEFINITION of stunning and brave people here. God bless

  • @Zynphii
    @Zynphii 27 днів тому +6

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

  • @olmacdonald25
    @olmacdonald25 2 роки тому +1960

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

  • @gemgirl223
    @gemgirl223 3 роки тому +631

    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
      @NBid-rp9ch 3 роки тому +3

      👌🏿

    • @amandacharlebois9295
      @amandacharlebois9295 3 роки тому +16

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

    • @C-126
      @C-126 3 роки тому +1

      @@amandacharlebois9295 she means at 3:32

  • @mischamg6714
    @mischamg6714 8 місяців тому +3

    So impressive how they deal with everyday life and come up with a way to deal with it. Pretty awesome people

  • @duplicitouskendoll9402
    @duplicitouskendoll9402 Місяць тому +1

    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!

  • @dailym0mo
    @dailym0mo 3 роки тому +2251

    Dang I wish I could just take these people disease away

    • @Erghhehe
      @Erghhehe 3 роки тому +31

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

    • @Ligerbee
      @Ligerbee 3 роки тому +6

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

    • @Anna-346
      @Anna-346 3 роки тому +1

      Same

    • @silverdemon1530
      @silverdemon1530 3 роки тому +1

      @LeilaTheBird not really

    • @thecrack-in7122
      @thecrack-in7122 3 роки тому

      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.

  • @SLURM187
    @SLURM187 2 роки тому +2047

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

    • @lukav3509
      @lukav3509 Рік тому +36

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

    • @AnEffingPinkCatThatBreathes
      @AnEffingPinkCatThatBreathes Рік тому

      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
      @johnwt7333 Рік тому

      And all he did was to take himself pictures

    • @cristophermarcos9322
      @cristophermarcos9322 Рік тому

      He about to do experiments on them

    • @B31L
      @B31L Рік тому

      Big L

  • @dangerously72
    @dangerously72 9 місяців тому +5

    We definitely all take our Health for granted. Bless all those struggling with this Disease.

  • @Barberdan
    @Barberdan 10 днів тому +1

    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.

  • @graceynextdoor
    @graceynextdoor 4 роки тому +4526

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

    • @eli_xikmqq4104
      @eli_xikmqq4104 3 роки тому +55

      how does she use the bathroom though

    • @napoleonbonaparte7529
      @napoleonbonaparte7529 3 роки тому +220

      @@eli_xikmqq4104 probably have a caretaker and use a bedpan

    • @ee4822
      @ee4822 3 роки тому +87

      @@eli_xikmqq4104 maybe don't think about that

    • @jimscanoe
      @jimscanoe 3 роки тому +155

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

    • @sekkusupisutoruzu
      @sekkusupisutoruzu 3 роки тому +343

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

  • @loveispowerful6311
    @loveispowerful6311 4 роки тому +800

    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
      @boxingmmacars23 4 роки тому +1

      @Barry Midikiner GTFO

    • @es2kaaay908
      @es2kaaay908 4 роки тому +12

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

    • @kelsca4415
      @kelsca4415 3 роки тому +1

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

    • @bigman8243
      @bigman8243 3 роки тому +2

      Zakaria Ogle you ok man?

    • @TeslasTacos
      @TeslasTacos 3 роки тому

      I read this as she said it.

  • @JeffBourke
    @JeffBourke 10 місяців тому

    heartbreaking to see them. my god they have amazing positivity! i love this trio!

  • @adim00lah
    @adim00lah 12 днів тому +1

    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.

  • @toriladybird511
    @toriladybird511 2 роки тому +782

    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
      @SessmaruKusanagiGaming Рік тому +31

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

    • @janellafernandez6476
      @janellafernandez6476 Рік тому +6

      My deepest condolences to her family, relatives, and friends

    • @maamenuamah9453
      @maamenuamah9453 Рік тому +2

      Wow, that's something

    • @etherraichu
      @etherraichu Рік тому

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

    • @marybrown8905
      @marybrown8905 Рік тому

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

  • @luhole
    @luhole Рік тому +2952

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

    • @momillions4395
      @momillions4395 Рік тому +52

      Not fair at all smh I hate this world

    • @squirrel8121
      @squirrel8121 Рік тому +11

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

    • @foopock
      @foopock Рік тому +1

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

    • @helloworld2784
      @helloworld2784 Рік тому +20

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

    • @Dez083
      @Dez083 Рік тому +4

      @@squirrel8121 god 😂

  • @RoseteMonik
    @RoseteMonik 4 місяці тому

    The 3 years old baby, bless his heart. Wish happiness to all of these beautiful people.

  • @Skelux
    @Skelux 6 днів тому +4

    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.

  • @chriscopes5105
    @chriscopes5105 3 роки тому +1385

    This is a sad condition

    • @seanelliott1625
      @seanelliott1625 3 роки тому +7

      Same

    • @eli_xikmqq4104
      @eli_xikmqq4104 3 роки тому +33

      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
      @Ewee689 3 роки тому +17

      You shouldn't pity on them you should encourage them

    • @chihuahua8419
      @chihuahua8419 3 роки тому +8

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

    • @pupandruff
      @pupandruff 3 роки тому +1

      666 likes

  • @AlexisMunoz82
    @AlexisMunoz82 2 роки тому +4084

    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
      @polemius01 2 роки тому +134

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

    • @rcbrothers1000
      @rcbrothers1000 2 роки тому +64

      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
      @stardustgirl2904 2 роки тому +30

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

    • @mohamednimal4345
      @mohamednimal4345 2 роки тому +4

      ❤️👏👏

    • @uttkarshsuri553
      @uttkarshsuri553 2 роки тому +5

      Power to you man ❤️

  • @grease_monkey6078
    @grease_monkey6078 10 місяців тому

    Makes you appreciate your muscles so much honestly these folks have tremendous courage to keep living

  • @tghooker5123
    @tghooker5123 9 місяців тому

    That's great inside edition shined light on this.

  • @abdiabdi1990
    @abdiabdi1990 3 роки тому +773

    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
      @pilesofkittens 2 роки тому +37

      I know it must suck :(

    • @doomslayer8431
      @doomslayer8431 2 роки тому +6

      Sleep paralysis

    • @RentFreeInsideYourDamnHead
      @RentFreeInsideYourDamnHead 2 роки тому +2

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

    • @phobos5475
      @phobos5475 2 роки тому +18

      @@RentFreeInsideYourDamnHead dude, its nowhere close

    • @aaronlira
      @aaronlira 2 роки тому +1

      @@doomslayer8431 only temp sucks

  • @Morpeth_Harriers
    @Morpeth_Harriers 4 роки тому +6682

    God bless them

    • @WASIURPA
      @WASIURPA 4 роки тому +122

      But god made them

    • @falkerwyscray9067
      @falkerwyscray9067 4 роки тому +27

      looks like they hadn't

    • @nicolerh
      @nicolerh 4 роки тому +95

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

    • @vaktuz2k856
      @vaktuz2k856 4 роки тому +71

      Medicinal Blood then your life is meaning less

    • @vaktuz2k856
      @vaktuz2k856 4 роки тому +13

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

  • @chillhousetsg_1412
    @chillhousetsg_1412 9 місяців тому

    They're such amazing people!!! I'm grateful that they're still living and healthy❤

  • @leebartlett5427
    @leebartlett5427 9 місяців тому

    Heartbreaking too see these poor people living with this condition makes you appreciate what you have and what we take for granted every day

  • @punchy77855
    @punchy77855 3 роки тому +545

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

  • @SunBunz
    @SunBunz 3 роки тому +835

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

    • @JupiterVortex
      @JupiterVortex 3 роки тому +16

      Mentally painful 😭

    • @SunBunz
      @SunBunz 2 роки тому +8

      @@JupiterVortex especially, yes. 😥

  • @kibby8823
    @kibby8823 9 місяців тому +1

    Glad Nancy is able to find joy in the little things 😊

  • @precision-exllc7727
    @precision-exllc7727 17 днів тому +1

    BLESS THESE PEOPLE. APPRETIATE WHAT YOU HAVE. I AM SO LUCKY TO BE HEALTHY

  • @precious_556
    @precious_556 3 роки тому +850

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

    • @sphjinx1448
      @sphjinx1448 3 роки тому +15

      @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.
      @Fau. 2 роки тому +5

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

    • @nasywanmuhammadyusuf7d920
      @nasywanmuhammadyusuf7d920 2 роки тому +9

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

    • @juicethegoat223
      @juicethegoat223 2 роки тому +1

      Yeah them homeless people should be damn grateful

    • @nearthecite2031
      @nearthecite2031 2 роки тому +1

      @@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

  • @DevouredByADream
    @DevouredByADream Рік тому +2965

    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
      @Dede-lf6kz Рік тому +17

      Amen

    • @bobfaam5215
      @bobfaam5215 Рік тому +50

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

    • @minalghubde9906
      @minalghubde9906 Рік тому +1

      True

    • @jcepri
      @jcepri Рік тому +13

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

    • @basichumanshit2755
      @basichumanshit2755 Рік тому +3

      AMEN

  • @carmen.g440
    @carmen.g440 10 місяців тому

    That is absolutely BRUTAL. god bless these incredibly strong individuals ♥

  • @Muflie
    @Muflie Місяць тому +2

    This once again shows that humanity is beautiful and that people can overcome all adversity!

  • @Radistella
    @Radistella 4 роки тому +614

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

    • @LowBudgetJustinY
      @LowBudgetJustinY 4 роки тому +3

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

    • @paulangeloaguilar2164
      @paulangeloaguilar2164 4 роки тому

      same this is sad 😞

    • @buckets1
      @buckets1 3 роки тому

      It dat cheemss

    • @ice3980
      @ice3980 3 роки тому

      600th comment like 😎

  • @MrTrevortxeartxe
    @MrTrevortxeartxe Рік тому +1722

    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
      @Lianotube Рік тому +35

      i wish u al the best❤

    • @cayea4076
      @cayea4076 11 місяців тому +18

      God bless you.

    • @Growgreen
      @Growgreen 11 місяців тому +23

      I’m sorry for your loss🙏🙏🥺

    • @Candycrashxoxo
      @Candycrashxoxo 11 місяців тому +52

      @@asdfdsafasfdsadfasdfsadfdon’t be disrespectful

    • @IdiotWashingMachine
      @IdiotWashingMachine 11 місяців тому +38

      ​@@asdfdsafasfdsadfasdfsadf Learn manners Mate.

  • @JackOusley
    @JackOusley 6 днів тому

    So inspirational, thank you for sharing your stories.

  • @2023BeTheChange
    @2023BeTheChange 6 місяців тому

    love how they found friendship with eachother. God Bless

  • @sarahs1849
    @sarahs1849 Рік тому +558

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

    • @B31L
      @B31L Рік тому

      Big L

    • @Ash_19503
      @Ash_19503 Рік тому +6

      ​@@B31L L + Jealous + No friends

    • @B31L
      @B31L Рік тому +2

      @@Ash_19503 youre asian L

  • @winniethepooh5605
    @winniethepooh5605 3 роки тому +816

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

    • @eli_xikmqq4104
      @eli_xikmqq4104 3 роки тому

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

    • @skywatson948
      @skywatson948 3 роки тому +2

      Omg ur profile pic teehee

    • @elizabetholiviaclark
      @elizabetholiviaclark 3 роки тому

      @@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
      @GrIs899 3 роки тому +1

      Screw your profile picture

    • @skywatson948
      @skywatson948 3 роки тому

      pop bob who's

  • @user-rc2bp2sy5x
    @user-rc2bp2sy5x 10 місяців тому +9

    I hope they find a cure! Wish them lot of strength.

  • @tbonerossigiggles6076
    @tbonerossigiggles6076 2 місяці тому +1

    Omigosh I can't imagine the pain 😢 I wouldn't wish this cruel disease on anyone. Bless their souls and determination ❤

  • @oscarpr8317
    @oscarpr8317 4 роки тому +422

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

    • @sirbeethoven
      @sirbeethoven 4 роки тому +3

      Worse live**

    • @gmyers4967
      @gmyers4967 4 роки тому +3

      amen

    • @PTS-Maid
      @PTS-Maid 3 роки тому +17

      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
      @ballstate2473 3 роки тому +7

      @@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....

    • @angelic_boy
      @angelic_boy 3 роки тому +6

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

  • @itsjanael3617
    @itsjanael3617 3 роки тому +856

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

  • @el_a_76juv21
    @el_a_76juv21 9 місяців тому

    My heart is full of joy and tear watching the three years old dancing and making new friends 😢😢

  • @earthling1984
    @earthling1984 6 днів тому

    I didn't know this existed. But I am so sorry for them. Amazing how so many show such happiness and enthusiasm.

  • @ChickenFerLei
    @ChickenFerLei 2 роки тому +397

    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!

  • @KingNemba
    @KingNemba 2 роки тому +1234

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

    • @shineayandrews1869
      @shineayandrews1869 2 роки тому +18

      Because aliens hate us

    • @gilbertsantacruz1397
      @gilbertsantacruz1397 2 роки тому +14

      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
      @zuziiice8907 2 роки тому +19

      @@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
      @omegalilbchass8270 2 роки тому +17

      Life isn't made to be fair unfortunately

    • @danielwilson7193
      @danielwilson7193 2 роки тому +18

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

  • @willdiebold3314
    @willdiebold3314 2 дні тому

    This absolutely breaks my heart, we live our lives often failing to be gratuitous for what we''ve been blessed with, yet I see these people smiling and moving forward and just living their best life-especially the kids.
    May we all learn something from these amazing and beautiful people.

  • @johnm2939
    @johnm2939 2 місяці тому

    The perseverance of all of these individuals is inspiring.

  • @danisewilliams549
    @danisewilliams549 4 роки тому +495

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

  • @hluna9938
    @hluna9938 3 роки тому +948

    “ 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
      @donmiller2908 2 роки тому +36

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

    • @krissianvictir1291
      @krissianvictir1291 2 роки тому +12

      God froze their asses lmao

    • @synlezz9298
      @synlezz9298 2 роки тому +14

      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
      @ericalopez369 2 роки тому +6

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

    • @dinosar9230
      @dinosar9230 2 роки тому +14

      @@krissianvictir1291 That ain't very funny.

  • @MadameZelda15
    @MadameZelda15 8 місяців тому

    😢 I feel so sad. How devastating. I wish them nothing but the best life as possible for them. ❤

  • @trashpanda2312
    @trashpanda2312 8 місяців тому

    even though they have a heartbreaking disease they still have smiles on their faces.

  • @zacharysmith6634
    @zacharysmith6634 3 роки тому +1128

    Stem cell research is a must now

    • @user-kp4ii5eu2w
      @user-kp4ii5eu2w 3 роки тому +38

      @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
      @hillaryhonde8425 3 роки тому +30

      Religious people won’t allow it :(

    • @Drakijy
      @Drakijy 3 роки тому +33

      @@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
      @wmweeza 3 роки тому +8

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

    • @Thor.Jorgensen
      @Thor.Jorgensen 3 роки тому +13

      ​@@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.

  • @JustIncredibleYT
    @JustIncredibleYT 4 роки тому +189

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

  • @sn0_.w
    @sn0_.w 9 місяців тому

    Such brave people Love From Kenya!

  • @jasonbig1353
    @jasonbig1353 8 місяців тому

    Beautiful and brave souls. I wish you all well and happy.

  • @rebeccashuman6199
    @rebeccashuman6199 3 роки тому +580

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

    • @ssc4554
      @ssc4554 3 роки тому +12

      God bless them

    • @amyzamora9502
      @amyzamora9502 3 роки тому +21

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

    • @prwildin223
      @prwildin223 3 роки тому

      I feel bad

    • @Dr_Mundo
      @Dr_Mundo 3 роки тому +2

      @@ssc4554 God cursed them.

    • @yazzy8980
      @yazzy8980 3 роки тому +10

      @@Dr_Mundo wtf?

  • @blve-r3verie
    @blve-r3verie 3 роки тому +458

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

    • @robloxsummer..
      @robloxsummer.. 3 роки тому +3

      Boi

    • @robloxsummer..
      @robloxsummer.. 3 роки тому +4

      Yea

    • @eli_xikmqq4104
      @eli_xikmqq4104 3 роки тому +8

      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
      @PrincessofKeys 3 роки тому +1

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

  • @thetomster7625
    @thetomster7625 9 місяців тому

    I'm so so impressed about how happy all of them look :)
    its like the woman said: I'm happy to have the ability to enjoy the little things in life... true for everybody

  • @nonkululekongqola4568
    @nonkululekongqola4568 10 місяців тому

    They're so brave and reselient, truly inspirational

  • @Hybred
    @Hybred Рік тому +1039

    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
      @dnegel9546 Рік тому +1

      How you get that font for username?

    • @spacefalls8260
      @spacefalls8260 Рік тому +5

      @@dnegel9546 look up copy paste font

    • @MetsuNoShin
      @MetsuNoShin Рік тому +6

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

    • @UglyNTRBastard
      @UglyNTRBastard Рік тому +20

      @@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
      @cherubvomit Рік тому +24

      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. ☹️

  • @kwol1ty620
    @kwol1ty620 4 роки тому +513

    I thought someone photoshopped the thumbnail wrong...

    • @oo0372
      @oo0372 4 роки тому +7

      Me too!!

    • @LowBudgetJustinY
      @LowBudgetJustinY 4 роки тому +23

      But sadly it's a real disease

    • @Ghostman223
      @Ghostman223 4 роки тому +4

      Me too

    • @jamhopsey
      @jamhopsey 4 роки тому +14

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

    • @thequintessential5503
      @thequintessential5503 4 роки тому +2

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

  • @mariacarmelo8958
    @mariacarmelo8958 29 днів тому +1

    Omg…this is so depressing to watch. Bless them and let’s be thankful if we’re not suffering from any harsh diseases. 😢

  • @10deximo41
    @10deximo41 Місяць тому +1

    What a compassionate doctor