Behind The Mystery: Fibrodysplasia Ossificans Progressiva (FOP)
One of the world’s rarest diseases is typically misdiagnosed for years while the clock ticks. By that time, your child may have already experienced common procedures or incidents that could cause Fibrodysplasia Ossificans Progressiva (FOP) to worsen. And because FOP is irreversible and causes bones to grow in soft tissue, essentially freezing it in place, it can be devastating.
Only one or two people in every million will ever experience FOP, and most of the world’s physicians will never know about FOP. We’ll meet two of these rare individuals: a courageous young woman with Fibrodysplasia Ossificans Progressiva, and her physician who recognized her FOP early. You’ll also learn about the small but mighty FOP community that’s creating greater awareness of this ultra-rare disease that makes bone grow where it shouldn’t.
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This world can be so unfair and cruel.
@wanya_telborn
Жыл бұрын
Nope just the people in it
@MySerpentine
3 ай бұрын
@@wanya_telborn So who invented this disease?
@leenananzeh
3 ай бұрын
@@wanya_telbornbro this is the result of a genertic mutation
@EkratkayeOfficial
5 сағат бұрын
It ain't the world's or the parents fault, it's the genetics fault.
Isnt this amazing on her? She suffers and still in her mind focusing on helping others , not a simgle complain coming from her mouth..😍😍take care Carli..xx
What a strong woman. I would be a mess
@eclypsegrl
Жыл бұрын
Same!
What an incredibly devastating disease. I would be so scared to vomit and choke or aspirate if my jaw froze like that.
Must be insane to be that lucky to go to some random doctor that encountered that before and remembered it instantly. Probably this is even more rare than 2 in a million. She should play some superball... this is insane statistical luck.
God this is awful. I pray this woman finds some relief
I get so sad knowing my condition is rare (1 in 2000.) That's got to be tough if it's 1 in 1 million.
@SirKunta15
7 ай бұрын
Whats your condition
I resonated with the having a dark sense of humor to cope with what you're going through
what a spirit..god bless her
i will never complain about my ehlers danlos syndrome again :(
Such a beautiful person inside & out , I hope she gets better
@GunsAndAmmo3
Жыл бұрын
There is no cure and no way to stop it
If there is a heaven, then there is surely a place for her there.
God bless this woman.
@podoau
Жыл бұрын
why did god allow this to happen ? Not much of a god
Joe Sooch, anyone?
Ok....might sound stupid...but what about permanent anti inflammation drugs??
I'm definitely not a doctor. The main thing I heard was an over reactive inflammation response. What about cold therapy and cryogenic therapy?
@dog_owner
Жыл бұрын
osteoblasts are cells that promote bone growth normally, my idea would be to use some substance that suppresses osteoblast activity and another that slows down or stops the body's immune response
@ValourCreed
3 ай бұрын
@@dog_ownerit doesn't work, IFOPA have tried.
Please can anyone explain the difference between FIBROUSDYSPLASIA and (FOP)
@ValourCreed
3 ай бұрын
The former is soft tissue calcification, FOP is progressive connective tissues ossification.
I am from India is there solution of that diagnosis my sister is also suffering that
@mirrorreflex
Жыл бұрын
6:40
There are a lot of parallels with Ehlers-Danlos syndrome.
@luckydevil1601
9 ай бұрын
Ectually none
@ValourCreed
3 ай бұрын
None.
Did this begin at a young age after getting vaccinations?
@davidjslack
Жыл бұрын
Is a genetic disease and is not caused by vaccinations. However any intramuscular injury can trigger bone growth. Some viruses are known to cause inflammation and trigger or flare up so some vaccines are not recommended.
@pvpperdogs
10 ай бұрын
She was born with it
@Just-Some-Helium
9 ай бұрын
Thats like getting hit by a truck and saying vaccines started it
@MySerpentine
3 ай бұрын
It began at birth, weren't you listening? God, anti-vaxxers are idiots.
Pewdiepie anyone?
You are amazing✨🌻🦋🥰🙏🏽
It’s good to see Carli still going strong despite more progression! I went to college with her for a bit and she was always friendly and funny when I saw her around 🫶