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!
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.
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
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...
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.
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.
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.
@@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 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
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!!
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.
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!
thats amazing!!!
God bless you.
Oh my God, congratulations! Godspeed 🙏
God bless the patients, mothers, fathers and physicians fighting this diagnosis.
And biologists... they're the ones who are fighting for having a cure 🥺🌸🌸🌸🌸🌸🌸🌸🌸
I never realized how much things we have to be greatful for
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.
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’
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
"The thing I learnt is that you just suck it up." That's an awful thing to hear young child say
I just wish that one day all these incurable diseases will be cured and no one have to suffer 😭😭
Ameen
Its called death
These poor people. God bless them.
god bless them..we need more funding for medical research
This is horrible. Very hard to see your child go through this disease, the parents and Josh must be so strong.
As a mother with a child disability I know what you guys are going through stay strong and I am praying 🙏
So heart breaking
Just take a second to appreciate that you can move your bones right now....
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
That figure was based of the USA smart ass
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
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...
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.
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.
Could you please email us at together@ifopa.org? We would like to share some information with you
How do I contact them
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.
Is there a cure because I'm tired of living with fop it hurts
What is the symptoms of fop ??? PLEASE TELL ME IM VERY SCARED CUZ MY BONE HURTS SOMETIMES
@@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
@@kimbokim927 My toe is a bit deformed and I'm very scared
@@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
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
How are some kids diagnosed so much later than others?
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!!
Is fop happen when we are born if we do have it
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.
@@onetwocue no I meant does it happen when your born I don't have it I'm just asking
@@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.
@@fishyfishy7148 lmao, dude answered your question. A “genetic disease” means you’re born with it…
I think I actually have fop
Tonya why?
Yea, don’t think so bud, especially when I look at you’re subscriptions
@@originalpadoru ???
Čøøķïê Êđïțš coming back to it, it really makes no sense, I had a stroke or something hah
;-; you make me wish I could find a cure for people
bryan marty
Oh what a horrible disease.
And people still believe in god folk. Let that sink in. They worship a man who creates a world were such things are possible.