FOP Awareness Video

  Рет қаралды 49,284

Int'l Fibrodysplasia Ossificans Progressiva Assoc

Int'l Fibrodysplasia Ossificans Progressiva Assoc

Күн бұрын

Пікірлер: 53
@michellezhai938
@michellezhai938 Жыл бұрын
Currently I’m working on a clinical trial phase 3 for the treatment of FOP, I have never been so proud of my job even though I went through many hard times but at the end it’s worthy!
@paboland_
@paboland_ Жыл бұрын
thats amazing!!!
@wrestlingfan2024
@wrestlingfan2024 Жыл бұрын
God bless you.
@dyawr
@dyawr Жыл бұрын
Oh my God, congratulations! Godspeed 🙏
@lildebbie997
@lildebbie997 5 жыл бұрын
God bless the patients, mothers, fathers and physicians fighting this diagnosis.
@directioner2870
@directioner2870 4 жыл бұрын
And biologists... they're the ones who are fighting for having a cure 🥺🌸🌸🌸🌸🌸🌸🌸🌸
@manjitabaral6094
@manjitabaral6094 3 жыл бұрын
I just wish that one day all these incurable diseases will be cured and no one have to suffer 😭😭
@ayshaaqib9722
@ayshaaqib9722 2 жыл бұрын
Ameen
@FrankWhite437
@FrankWhite437 Жыл бұрын
Its called death
@nobbut4u
@nobbut4u Жыл бұрын
Watching this makes me cry, those people are so amazing and strong. My heart broke when the parents explained their children's condition. I hope they have a nice day everyday.
@Ichthus61
@Ichthus61 4 жыл бұрын
I actually knew a woman who had this. She was almost completely unable to move and passed away. I pray for a cure for this awful condition’
@brooklyntitiyani5418
@brooklyntitiyani5418 4 жыл бұрын
I never realized how much things we have to be greatful for
@Squidlark
@Squidlark 5 жыл бұрын
"The thing I learnt is that you just suck it up." That's an awful thing to hear young child say
@DavidKehley
@DavidKehley 4 жыл бұрын
Watching this makes me want to cry I feel so bad for all these people with FOP god bless that doctor for all his research
@c.joyceb.8991
@c.joyceb.8991 4 жыл бұрын
This is horrible. Very hard to see your child go through this disease, the parents and Josh must be so strong.
@das2003
@das2003 2 жыл бұрын
These poor people. God bless them.
@sugartea6982
@sugartea6982 4 жыл бұрын
Just take a second to appreciate that you can move your bones right now....
@AnkushSharma-zv5hv
@AnkushSharma-zv5hv 4 жыл бұрын
god bless them..we need more funding for medical research
@nathaliegaud3593
@nathaliegaud3593 Жыл бұрын
As a mother with a child disability I know what you guys are going through stay strong and I am praying 🙏
@arlenedrake9305
@arlenedrake9305 Жыл бұрын
So heart breaking
@wrestlingfan2024
@wrestlingfan2024 Жыл бұрын
Please, Father God, give scientists and doctors the wisdom and knowledge to find a cure as soon as possible so that these people do not have to suffer anymore. In Jesus’ name, Amen.
@topscream8840
@topscream8840 4 жыл бұрын
It's even rarer though, if it would be rarity of 1 of 2 000 000, there would be at least 4 000 in the world, but there are about just 700 known cases
@DeeZnuts-to2bp
@DeeZnuts-to2bp 4 жыл бұрын
That figure was based of the USA smart ass
@topscream8840
@topscream8840 4 жыл бұрын
Dee Znuts Damn, someones having a rough day, especially based on the fact i posted that comment 5 months ago, but still you just want to be a bitch about it
@dyawr
@dyawr Жыл бұрын
Key word is 'known'. They figured this rate based on how prevalent it is in the US & other developed countries (with good record-keeping & quality health services), probably. Bc a lot of doctors in rural areas, for example, prob wouldn't even know how to diagnose this disease or think of it at all...
@ayshaaqib9722
@ayshaaqib9722 2 жыл бұрын
I m from Pakistan and my 5 year girl also have FOP. I. Wish to have all of these wheel chair like equipments for her.but it is not possible in this country.
@IFOPA
@IFOPA 2 жыл бұрын
Could you please email us at together@ifopa.org? We would like to share some information with you
@kieranfallon818
@kieranfallon818 2 жыл бұрын
How do I contact them
@hariawatinorhidayah9424
@hariawatinorhidayah9424 2 жыл бұрын
i wanna knw more about fop..about what they cant do and can do..my son 10years old this year and we already knw that he's suffer due of this pain fop..its already 2years that we know it n still dont knw how to take care..at the month of july he got flu then make he breath too hard,we felt so woried..plz share with me how to care and how to make he felt easy becouse of fop he got hearing problem.
@hannahvivi7042
@hannahvivi7042 4 жыл бұрын
How are some kids diagnosed so much later than others?
@someonefinds2731
@someonefinds2731 4 жыл бұрын
Some kids just have the FOP triggered later than others and it's hard to know what makes it flare up bc every case is a little different. Hope this helps!!
@babythanhx3
@babythanhx3 5 жыл бұрын
I think I actually have fop
@shoutotodoroki2829
@shoutotodoroki2829 5 жыл бұрын
Tonya why?
@originalpadoru
@originalpadoru 5 жыл бұрын
Yea, don’t think so bud, especially when I look at you’re subscriptions
@spacelemonss
@spacelemonss 5 жыл бұрын
@@originalpadoru ???
@originalpadoru
@originalpadoru 5 жыл бұрын
Čøøķïê Êđïțš coming back to it, it really makes no sense, I had a stroke or something hah
@sugartea6982
@sugartea6982 4 жыл бұрын
;-; you make me wish I could find a cure for people
@treysocrazy1383
@treysocrazy1383 4 жыл бұрын
Is there a cure because I'm tired of living with fop it hurts
@kozumelubs1574
@kozumelubs1574 4 жыл бұрын
What is the symptoms of fop ??? PLEASE TELL ME IM VERY SCARED CUZ MY BONE HURTS SOMETIMES
@kimbokim927
@kimbokim927 4 жыл бұрын
@@kozumelubs1574 serious stop worrying...it was said in the video one of the first signs is a disformed big toe ....you bone hurts sometimes....so does alot of peoples ....8/10 peoples will, go to a doctor ....there's thousands of reasons why.....to jump to FOP is ridiculous
@kozumelubs1574
@kozumelubs1574 4 жыл бұрын
@@kimbokim927 My toe is a bit deformed and I'm very scared
@kimbokim927
@kimbokim927 4 жыл бұрын
@@kozumelubs1574 you're probs seeing things that a nomral but u think are deformed ....theres only 200 cases of this in the world....i highligh doubt u have this RA can disform peoples toes and fingers...why are u jumping so this consulison ? im pretty sure u would know if u had this....u would have more done growth ...lumps ....just because your bones hurt means nothing...i hurt everyday ...your worrying would help your pain btw...stop looking on the internet for answers and go to your doctor
@WillowClarke-qz5xd
@WillowClarke-qz5xd 6 ай бұрын
stopppppp cause i have poh and the amount of people saying they might have it is so annoying like 160 people world wide have it I doubt you do
@fishyfishy7148
@fishyfishy7148 4 жыл бұрын
Is fop happen when we are born if we do have it
@onetwocue
@onetwocue 3 жыл бұрын
You have it. It's a genetic disease. It's not a mutation like down syndrome or getting cancer from tobacco use. Its kinda like being born with blonde hair. It's genetics.
@fishyfishy7148
@fishyfishy7148 3 жыл бұрын
@@onetwocue no I meant does it happen when your born I don't have it I'm just asking
@uknownevilhero5918
@uknownevilhero5918 3 жыл бұрын
@@fishyfishy7148 it can happen at any age, some get it when their born, some get it when their a different age, like 17. It can happen at anytime.
@_unrulyhair
@_unrulyhair Жыл бұрын
@@fishyfishy7148 lmao, dude answered your question. A “genetic disease” means you’re born with it…
@davnet5247
@davnet5247 10 ай бұрын
bryan marty
@njsmkmmsthatsit3518
@njsmkmmsthatsit3518 Жыл бұрын
Oh what a horrible disease.
@DennisM-wp7jt
@DennisM-wp7jt 6 ай бұрын
And people still believe in god folk. Let that sink in. They worship a man who creates a world were such things are possible.
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