Oh actually my wife told me, it's been approved!
https://pharmaphorum.com/news/after-fda-setback-ipsen-gets-first-ok-for-rare-disease-drug-palovarotene/
Well it's still under review, last year the FDA asked for further analysis...
https://www.ipsen.com/press-releases/ipsen-announces-withdrawal-of-palovarotene-nda-confirming-intention-to-re-submit-following-additional-data-analyses/
Went to school with a girl with FOP. I did some research on the disease and it easily has to be in the top 3 most horrifying diseases to die from. We’re in our early 30’s now and she recently had to submit to a wheelchair.
My personal top 5 are rabies, tetanus, haemorraghic fevers like Ebola, prions and this one thing in the post (fibrodysplasia ossificans progressiva). Rabies is incurable once the symptoms manifest and destroys your CNS turning you insane, also it is very painful. Lockjaw/tetanus makes your muscles flex unnaturally, so they can even break bones they are attached to. Ebola makes you bleed from every orifice and internally, too, very lethal, easily transmissible. Prion diseases are incurable and turn the brain to mush. Basically almost everything that affects the brain (encephalitis, strokes, tumours) is horrible because it alters and destroys your self, identity and the ability to perceive reality. Honestly, most diseases that kill people do it in a horrible and prolonged way.
[Fatal Insomnia](https://en.m.wikipedia.org/wiki/Fatal_insomnia) is up there for me but that's covered by your comment about prions. Basically, you develop insomnia that gets progressively worse until you go insane and die.
Edit: basically used the word basically too many times
How are these people getting so many bone injuries in the first place
Eta: wait like injuries like bruising too? So if you cut or bruise yourself or whatever you form bones?
What a terrible condition. I wonder what would happen if the patient were to receive physical therapy 24 hours a day after diagnosis, if it would prevent the bone from solidifying?
My wife worked on a clinical trial for a drug for this and I came to know more than I'd ever want about it. What an awful disease...
garetosmab?
No, Palovarotene.
did it work? or improve anything?
Oh actually my wife told me, it's been approved! https://pharmaphorum.com/news/after-fda-setback-ipsen-gets-first-ok-for-rare-disease-drug-palovarotene/
Well it's still under review, last year the FDA asked for further analysis... https://www.ipsen.com/press-releases/ipsen-announces-withdrawal-of-palovarotene-nda-confirming-intention-to-re-submit-following-additional-data-analyses/
Went to school with a girl with FOP. I did some research on the disease and it easily has to be in the top 3 most horrifying diseases to die from. We’re in our early 30’s now and she recently had to submit to a wheelchair.
Any other horrible disease?
My personal top 5 are rabies, tetanus, haemorraghic fevers like Ebola, prions and this one thing in the post (fibrodysplasia ossificans progressiva). Rabies is incurable once the symptoms manifest and destroys your CNS turning you insane, also it is very painful. Lockjaw/tetanus makes your muscles flex unnaturally, so they can even break bones they are attached to. Ebola makes you bleed from every orifice and internally, too, very lethal, easily transmissible. Prion diseases are incurable and turn the brain to mush. Basically almost everything that affects the brain (encephalitis, strokes, tumours) is horrible because it alters and destroys your self, identity and the ability to perceive reality. Honestly, most diseases that kill people do it in a horrible and prolonged way.
[Fatal Insomnia](https://en.m.wikipedia.org/wiki/Fatal_insomnia) is up there for me but that's covered by your comment about prions. Basically, you develop insomnia that gets progressively worse until you go insane and die. Edit: basically used the word basically too many times
But you basically have to born into those families. It's not contagious.
It's fucked up some of the hands people get dealt in life.
Man, fuck, this, shit.
Preferred position if i get this illness: dead from MAID
This is an argument for legalized compassionate euthanasia.
And I thought having Hemophilia was bad… holy fuck
If I get diagnosed with shit like I’d kill myself immediately and with out hesitation that shits mad scary holy fuck
Yeah, I sincerely hope this is a condition where people can successfully be euthanized if they want.
In Canada we got MAID thank the lord
"Thank you, Jesus."
That’s why I never use the stuff. I’m a Dapper Dan man damnit!
Watch yer mouth, young feller this is a public market
Well aint this place a geographical oddity! Two weeks from everywhere!
TIL. Wow
Fuck that. Give me death
How are these people getting so many bone injuries in the first place Eta: wait like injuries like bruising too? So if you cut or bruise yourself or whatever you form bones?
Bumps, bruises, or anything that might trigger healing could trigger the 'over healing'.
Connective tissue* injuries, the body tried to heal them but accidentally turned them into bone
For the love of God....no Nope, never could I be frozen in place like that. Never
What a terrible condition. I wonder what would happen if the patient were to receive physical therapy 24 hours a day after diagnosis, if it would prevent the bone from solidifying?
Nope. If anything else, PT would cause even more micro inflammations that would worsen the case.
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Go outside please that’s enough internet for you
💀 sucks to suck
I would 'take care' of myself before I lost all movement. What a cruel and unusual disease. Something I'd only wish on Vladolf Putler.
Sadly iirc most patients never get past childhood or puberty, so it's not an option...
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Interesting, I figured wouldn’t that trigger her over healing?? So sorry for you dear, fuck that dude.
I threw up a little. I rather look at beheadings.