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Behind The Mystery: Fibrodysplasia Ossificans Progressiva (FOP) 

The Balancing Act
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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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21 авг 2024

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Комментарии : 42   
@heidigone
@heidigone Год назад
This world can be so unfair and cruel.
@wanya_telborn
@wanya_telborn Год назад
Nope just the people in it
@MySerpentine
@MySerpentine 3 месяца назад
@@wanya_telborn So who invented this disease?
@leenananzeh
@leenananzeh 3 месяца назад
​@@wanya_telbornbro this is the result of a genertic mutation
@EkratkayeOfficial
@EkratkayeOfficial 4 дня назад
It ain't the world's or the parents fault, it's the genetics fault.
@petana7284
@petana7284 Год назад
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
@bryanmarty7085
@bryanmarty7085 2 года назад
What a strong woman. I would be a mess
@eclypsegrl
@eclypsegrl 2 года назад
Same!
@CrazyCircleOriginal
@CrazyCircleOriginal 8 месяцев назад
What an incredibly devastating disease. I would be so scared to vomit and choke or aspirate if my jaw froze like that.
@TeDynef
@TeDynef 4 месяца назад
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.
@wheatstonebridge
@wheatstonebridge Год назад
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
@SirKunta15 7 месяцев назад
Whats your condition
@BreakingChains383
@BreakingChains383 11 месяцев назад
God this is awful. I pray this woman finds some relief
@anchalchaudhary5040
@anchalchaudhary5040 Год назад
what a spirit..god bless her
@Mentalsauceage
@Mentalsauceage 8 месяцев назад
I resonated with the having a dark sense of humor to cope with what you're going through
@Wtvrflotesurgoat
@Wtvrflotesurgoat Месяц назад
i will never complain about my ehlers danlos syndrome again :(
@steviedub9370
@steviedub9370 Год назад
Such a beautiful person inside & out , I hope she gets better
@GunsAndAmmo3
@GunsAndAmmo3 Год назад
There is no cure and no way to stop it
@daisukicliff9119
@daisukicliff9119 Год назад
God bless this woman.
@podoau
@podoau Год назад
why did god allow this to happen ? Not much of a god
@berner
@berner Год назад
If there is a heaven, then there is surely a place for her there.
@justinlucus9580
@justinlucus9580 Год назад
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
@dog_owner Год назад
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
@ValourCreed 3 месяца назад
@@dog_ownerit doesn't work, IFOPA have tried.
@bornwithoutconsentobviously
@bornwithoutconsentobviously 11 месяцев назад
Joe Sooch, anyone?
@chantalseguin1091
@chantalseguin1091 8 месяцев назад
Ok....might sound stupid...but what about permanent anti inflammation drugs??
@mrunknown-gn4js
@mrunknown-gn4js Год назад
Please can anyone explain the difference between FIBROUSDYSPLASIA and (FOP)
@ValourCreed
@ValourCreed 3 месяца назад
The former is soft tissue calcification, FOP is progressive connective tissues ossification.
@shardbade3984
@shardbade3984 Год назад
I am from India is there solution of that diagnosis my sister is also suffering that
@mirrorreflex
@mirrorreflex Год назад
6:40
@MelyssaAKASkittlez
@MelyssaAKASkittlez Год назад
There are a lot of parallels with Ehlers-Danlos syndrome.
@luckydevil1601
@luckydevil1601 10 месяцев назад
Ectually none
@ValourCreed
@ValourCreed 3 месяца назад
None.
@dontump2286
@dontump2286 Год назад
Did this begin at a young age after getting vaccinations?
@davidjslack
@davidjslack Год назад
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
@pvpperdogs 11 месяцев назад
She was born with it
@Just-Some-Helium
@Just-Some-Helium 9 месяцев назад
Thats like getting hit by a truck and saying vaccines started it
@MySerpentine
@MySerpentine 3 месяца назад
It began at birth, weren't you listening? God, anti-vaxxers are idiots.
@chetanuniyal3428
@chetanuniyal3428 Год назад
Pewdiepie anyone?
@nikrosevca9294
@nikrosevca9294 Год назад
You are amazing✨🌻🦋🥰🙏🏽
@mossvibes
@mossvibes 20 дней назад
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 🫶
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