How People With FOP Live As Disease Turns Bodies Into Bone

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

[star.set]

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

[mariateresitacortez]

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?

[bekahhooper]

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

[glen]

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.

[treysf]

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

[CrImSoN]

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

[Morpeth_Harriers]

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

[apacolypz]

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.

[Leah_]

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...

[MrMelgibstein]

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

[crawdaddyy]

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

[wesleydonnelly]

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...

[Mugiwarak]

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

[neonlights]

“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.

[DwaineWoolley]

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

[tankthomus]

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

[gemgirl]

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.

[blondechick]

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.

[JaytheP]

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

[AmericanRX]

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