“Man Turning into Stone.” Growing a Second Skeleton Where my Muscles and Tissues Turn to Bones. Fibrodysplasia Ossificans Progressiva (FOP) Ask Me Anything!

without being too broad... what's it like? Like, how does it feel physically? Can you tell when a particular piece of tissue is changing? Can you feel sharp points? What's most notable physically aside from just having no mobility?

Yo get these things called flares. It's basically giant swellings. Depending on where it is but it can be like knives being pushed into your muscles and can hurt tremendously especially near your nerves. The worse part really is the pain will stop or lessen a lot but you lose that body's movement permanently :/

When did you start noticing issues and how quickly did it progress? What is your favourite TV show or movie?

Symptoms starting since birth but obviously do not remember. My shoulders locked around age 5 then lost my elbows at around 10ish. Got severe scoliosis during puberty. Lost movement in my legs at 20 so I cant walk anymore and reliant on a wheelchair all the time.

Favorite show: 99!

Hey Joe, good to see you here again. I completed my PhD in the Shore/Kaplan lab at UPenn; I'm listed in the former members section.

What are your thoughts about the first treatment being approved by the FDA in August? The drug is palovarotene (brand name Sohonos); it prevents chondrogenesis (ie, cartilage formation), which is an intermediary step in the pathology of FOP from soft connective tissue into heterotopic ossification.

completed my PhD

First things first. Big congrats to you and a big thank you too! All the staff put a lot of hours to get to where we are now so thank you!

I never thought I see a drug approved within my lifetime. It's unreal to see! it will unfortunately can't help me yet. It is only uo to 90% effective so that 10% us still disabling. Even I do take it, getting surgery might not be a good idea because my muscle might be gone and I wouldnt be able to move my elbow if I do not have muscle. I am hoping for a miracle but I'll need a few miracles to happen and not Sur if it is possible in my lifetime.

I focus more on living my life the way it is right now because that dream is still 5 to ten years and I cannot wait really. I am livening in the now because I may not li

What keeps you going?

I ask this because I don't have medical issues and yet I often lack the will to live because of other reasons. I wonder what motivates you to wake up every morning and just do what have to do.

I apologize in advance if this question is offensive.

Women in a nut shell. They don't want to be with a loser.

I created long term goals that I wanted to achieve so like I want the money and power and fame so I started my YouTube channels around 2-3 years ago. I instilled a discipline to make 2 videos a week. If I want to be known, I have to put myself out there and being my authentic self. It builds up my confidence and talking skills and outreaching abilities.

Now I am verified on instagram and monetized on Youtube with 7k subs with 30-80k views per month. I am really proud of that especially how cuffed I am with my disability. I also want to prove to me and everybody else that if I can make it then anybody can! Just need a lot of drive and motivation and hard work.

In this way (just from the POV of a stranger) you are really an amazing person. I know that you hate being told that you "inspire" able bodied people because I watched some of your videos and I get your vibe.

I just want to let you know that I am personally happy that you share your personal life with the world and allow others to know about your story. I really wish you all the best not in the spiritual way or whatever but I really fucking hope that scientists can fix you as soon as possible.

Wait there's something wrong with me????????

Why am I crying in a Target right now

A good friend of mine died from complications of FOP. He had a great life though, with an amazingly supportive family. I miss him. Lots.

He was an avid gamer, but as all of his joints were grown over, he had to do everything with an old timey mouse with a ball in it using his thumb. He had JUST enough mobility left to mouselook this way. And he was very, very good at it.

The infections kept coming despite his family’s pro-level diligence. One took him from us when he was in his late 30’s. I cherish the time I had him in my life. He was an amazing and inspirational friend who lived as full a life as possible, given the circumstances. I wish the same for you, sir.

You are the second person with fop I have ever interacted with. Interestingly, he was also woman-crazy and loved his porn. Is that, like, a normal part of FOP or something?

if you tell me his name, I probably know of him. The FOPers are a pretty close knit family so we are all told when somebody passes away.

With regards to porn and women, I feel we are just being regular guys. I would like to add that I think disability people can get away with a lot more. if a regular guy says he likes porn then it doesn't go that well. It's also the vibe of a person. I was also thinking that maybe he's trying to fit in cause all guys watch. With that being said, he has more free time so he watches more. Regular people are busy with their lives so they do not have time or you know have a partner where porn isn't needed. Unless you are married!

Does it disproportionally affect males? I went to grade school with a girl named Carly who had FOP - or something extremely similar - where specifically bruises/injuries turned to bone.

I probably know who you are talking about. St. Louis Area?

Affects both sex evenly. Even in all races too.

What's your favorite show, food, or hobby to help when you're having a rough day?

So I fortunately lost the ability to swallow(ayo) food about 8 years so food is off the table literally.

Not sure why but watching people speed running video games is really relaxing for some reason.

I also got into 3d printing so I'm busy working on designs and getting patents to start selling to help the disability community. It's very awesome to see something go from nothing to a physical object within an hour. It's so fucking cool!

This is such a badass answer! There's something poetic about you doing 3-D printing, with your condition.

What food flavors do you miss the most?

I miss nachos :(

and Sprite on a hot day and it burns your throat but you let out a big ahhh after you finish it.

I’m struggling with potentially losing my eyesight (20% in my right eye gone atm), and it’s the little things like this that hit me hardest when I hear people talking about their experience. Sprite on a hot day. Never would have thought about it, but yes. YES.

So much of life is an experience that we just don’t even realize we take for granted. I’ve got next to no peripheral vision in my right eye, so it’s stuff like walking to work and not seeing the neighbourhood cat walking over to say good morning until I hear its little “meow” of greeting. Little stuff can be the biggest stuff.

Thank you so much for sharing your story and your journey. You’ve made me smile today.

Sometimes I love Reddit.

Do you have Retinitis Pigmentos by any chance?

I hope the Reddit Army sends you tons of boobies so you see as many as you can in a lifetime. Feel free to send me some too :)

It's clear that you're very invested in the research and fundraising, and that you try to stay up-to-date on the science. That's really cool that you can take an academic perspective of your condition and find it interesting, despite the everything-else about it! Forgive me if this is morbid, but are you interested in becoming part of the research.....someday?

I actually was part of a drug trials and will be another in another soon. They also have human studies done to be part of history. Scientists know my disease will not exist in 50 years so it's good to document. Kind of like Darwin collecting birds to see the difference or Ash Ketchum collecting Pokemon. So I like to think I'm a shiny pokemon :)

"Scientists know my disease won't exist in 50 years"- WOW. And what a great attitude to have about it!

to clarify. My disease will always exist but my generation will be the worse. The next generation will just need to take a medication or monthly then show a picture as motivation to not miss a trial cause NOBODY WANTS TO BECOME ME. *Cries

Ohhhkay, that makes sense. I guess what I was dancing around is, do you plan to donate your body to research?

Also, I'm the same person you replied to about nachos and sprite. I will have some nachos and sprite for ya.

Yes. I been trying to reach out to the Body Exhibit People so my body can be preserved and on display so I will di but my legacy will live forever!

With regards to nachos Buy this black bean dip then put it on tortilla chips with jack cheese in a microwave for 2 minutes or so,, ITS SO GOOD!

Do you keep an iguana? Really enjoy watching my leopard gecko run around herps have so much personality.

I hate iguanas! 😂

I had the username since I was ten because of a super good restaurant in Aruba so it like always stuck and do not want to lose my karma and reddit history 😂

Huge bonus if somebody has a big picture of the restaurant!

My reddit name is the least original thing to do with the least original name but I thought it was edgy about 10 years ago 😆 yeah same

Okay Barrack Obama

I picked mine because it was my Runescape username at the time 😂

I'm glad I ain't the only one with a cringe username Arnold Schwarzenegger!

Huge bonus if somebody has a big picture of the restaurant!

Good ol' Iguana Joe's in my father's birthplace of Oranjestad.

Although he moved away in the 1960s, a wee bit before Iguana Joe's was a thing.

Ayyeeeeee. Dont remember it looking like that. Maybe it was a different restaurant or different city altogether. Glad somebody understands my origin story.

Have you ever broken a bone and if so what was the healing process like? Would it be faster than the average persons? Longer?

I broke an extra bone in my thigh actually. It felt really good for about 3 seconds then extreme pain and numbness for a year. Not sure about the actual broken bone but my repair mechanism is faulty so my body just replaces the thigh muscle into more bones till it thinks its finished "healing".

I've always wondered: during the process of ossification, can you ever consciously "choose" how something ossifies? or do things just suddenly get 'locked' into place, and you're not able to adjust them to something more comfortable?

No. My body will freeze itself however it wants then the bones grow. Depending on the bone placement and size, it can affect a little or everything. Like everybody’s arms are a little bit different. Similar but different.

Do they know what causes the flare ups?

They know the gene that causes it. They do not know why it gets triggered. Just faulty DNA that it is truly random. Nobody in my fam has it and it doesn't affect any specific race or sex. Just truly random.

Hey Joe,

Looking good dude, sorry for your condition, but thanks for being with us.

I hope I'm not too late, but are there any treatments for your condition, and have you had any experience with any of them?

Also, how can we help? Are there any charities, studies, or foundations that we should consider contributing to?

Thanks again, take care.

Theres a drug that has been approved! but it will help the future generations and not me unfortunately.

Donating is always the best choice!

https://ifopa.salsalabs.org/joe_sooch/index.html

Or sending nudes keeps me going!

Also singing “Never Gonna Give You Up” with POTUShttps://www.youtube.com/watch?v=dQw4w9WgXcQ

golf clap

Very well done.

Never Gonna Let You Down :)

What do you do for money? I imagine it's very expensive having caretakers and all the specialized equipment you need. Are there government programs that take care of the costs? Would this be a death sentence to a child born to a poor family?

I'm not discouraging you or commenting on the US Healthcare system, I'm just genuinely curious.

I am currently on medicaid so I can't really make money. They have a program where you can hire caregivers. The rest is with my family unfortunately.

Pros of Living with parents: Free rent

Cons:Everything else

There is not much else I can do. Going into a facility will not be a more pleasant experience so the situation I am in is the best use of my cards at the moment.

How do you get around? Also what's your favorite fast food restaurant?

I rely on caregivers and my family to get around. I cannot put my head down to see the ground so unfortunately need somebody to psh me around. I know I could get an electric wheelchair and a screen but I also live in NYC and would extremely difficult navigating the streets and people.

I haven't eaten in 8 years but my go to was Burger King and their milkshakes! They fixed the broken machines in 8 years? Right!?

I haven't eaten in 8 years

So how do you get energy? I assume an IV?

I am now able too photo synthesize!

When it is cloudy then I use my mic key(tube) in my stomach for water and formulas.

How is your condition different from scleroderma?

FOP creates bones. scleroderma hardens the skin. Similar outcomes though

What are the biggest questions you find yourself thinking about? Family? Humanity? The ultimate nature of time and space?

How did the Roman Empire collapse?

Depends on how much of a purist you are, whether you're in the camp that thinks Odoacer supplanting the puppet emperor Romulus Augustulus in the West was the end or whether you think the Byzantines in Constantinople were more than just the spiritual successor state and in fact were a true continuation of the empire until 1453 when Mehmed II took the city.

Join us nerds in /r/AskHistorians !

This guy histories!

Do you get kidney stones?

nope

Are you a Coke or Pepsi man?

I'M IN LOVE WITH THE COCO

Any unexpected benefits?

Get to have lots of karma on Reddit. Thats worth something right?!

What music do you enjoy listening to? Btw I think you're hilarious, just been watching a few of your videos and you cracked me up!

Here is one of my favoriteeee I really hope he makes it.

I listen to all genres and songs. Do not have a particular favorite. I really like The Weeknd and MGK but not obsessed with anybody.

Did you/do you work on alternative communication methods for when you can no longer reliably speak or gesture, or is/was the plan to just deal with that when it became a problem? If yes, what methods do you use?

I will always be able to spe

What happens if you stop the calcium intake and nutrients needed to build bone?

Then my whole body suffers.

How do you feel about this: https://www.medscape.com/viewarticle/995579?form=fpf and does it seem truly as promising as the articles make it sound?

https://www.medscape.com/viewarticle/995579?form=fpf

It is very promising! it is shown to work. The problem is that it is up to 90% effective. 10% of bone can still lock a body part. The top scientists say an FOPer will need a cocktail of drugs to one 100% effective.

With all that being said, it will help kids more not affected. Getting surgery to remove bones is easy but there may not be enough muscle to have movement so my elbow could straighten out but I would have no elbow movement so like why does anybody do??? Be a wacky inflatable tube man for a car dealership?

Fibrodysplasia Ossificans Progressiva

You can read minds?!?

Pretty much. all men are thinking about the Roman Empire and women are thinking about food.

I’m sorry you’re going through this. I truly hope it isn’t painful. I really do

I thought I had it bad when I was 15. I got myositis ossificans playing football. I Got a corked thigh but didn’t put ice on it because I was cramping. Over the next few weeks the pain started. The doctors then Told me what it was and explained it to me as “blood seeps into the muscle, then calcifies.

I just wanted to know, Is it hard to describe to people what it’s like? Do you think they actually understand or can picture what you’re trying to explain?

Stay strong mate

It’s easy to understand but the disease seem straight out of a horror film. Like how could it exist.

Does all the smiling and positivity ever annoy you? You seem sound of mind and I know that all that happy happy fun time schtick would drive me fuckin nuts

I’m very realistic with myself and the world. As being part of the disability community, I fucking hate it. The thing is that you see often because gets more likes and attentions. People are attracted to happiness. Not oh this sucks!

Are you suffering from the same affliction Mick Mars from Motley Crue has?

Nope.

Your style is badass. Where do you buy your clothes?

ASOS!

I think it's kind of amazing thinking about that I'm living in the same moment with other amazing people like you! You're a rockstar man! I didn't know you before, but I just read your history and I've found valuable knowledge in your experience.

Now, the questions: how do you find strength to get your drive in your daily life? I think that we all have a kind of desease, I mean, it could be some addiction, mental issues, physical illness, financial struggling, family issues and so on. But you, it's seems like you have a special strength, more than average I think. How can you explain this?

And, how is your relationship with God?

Im going to sign up to your channels.

Thanks for your time and sorry for my English, I'm still in practice.

You have 3 options: be a loser, be in the middle and be content or be great. I choose to be great so I put a lot of work into my craft. If I dont make it big then I’ll die trying.

I’m an atheist and I can’t believe any being would give me such a horrible disease. If they do exist then I would have a problem why they would bring so much pain to the world. Logically religion does not make sense.

Hi Joe, I'm disabled myself, I've cerebral palsy. I've been thinking about/ wanting to do a social media thing for awhile now, but I've been hesitant because I've been worried about looking stupid, negative comments towards obvious flaws etc. I know I have to just do it at some point but do you have any advice or tips on handling social media, particularly the negative side? Also what are some positives?

The best advice is to just start and be yourself! The more likes you get is when you start pandering and be like look how happy I am or watch me struggle or screw this person because they parked in a wheelchair spot.

I tried to go the more normal route that I don’t share my shit all the time and just doing cool stuff. People get lost in their disability identities. I get you have a disability but don’t make it your whole life unless you just want likes.

But make it your own. I find the community awesome in a lot of ways but it gets toxic where people complain but actually not do anything like f this person who parked in a wheelchair space and I’m like did you confront the person to why it’s bad. It’s always no turn posting on social media is pointless and an echo chamber.

I dont want to sound like a cynic but there’s a lot of good people out there who are supportive.

Does... Does it affect your dick too?

They use me a stunt double when your mom says almost there!

Are you afraid of pigeons?

Uhhh noo ?