Man Turning into Stone. Growing a second skeleton where my muscles and tissues turn to bones. Fibrodysplasia Ossificans Progressiva (FOP). AMA!

I can't imagine it is easy, but what is daily life like for someone that has this? Do you have a normal job? Hobbies? Friends? Etc.

It's not easy, but its my "normal". I alost 95% of my movement so I need help with literally everything. Eating, going to the bathroom, getting out of bed, setting up for the day.

I currently work for a women's charity and also edit my Youtube videos and host my own podcast!

I really only have one friend who I can trust with my life. The rest are people I just know that come in and out of my life. I put my focus on people who support and really give a shit about me. Not worth to put in energy towards a relationship when they do not reciprocate!

Do you think you might be asking too much of people? There are good people who maybe aren’t able to dedicate part of their own life to “support and really give a shit about you”. I have a lot of friends who I love but sometimes we don’t speak for months. Not trying to be a dick but it sounds like trying to be your friend might be a lot of work and I don’t think you should disparage people for not being able to do that.

I totally get it! I want to be surrounded by people who support me and care. Everybody has their place so to speak. Like some will be a business contact or a fling or whatever. Am I expecting someone to help me eat, no. but I require that care and comfort when leaving the house because I need  that comfort because oof my limitations and what if.

it just not cool to have people hit you up when they are bored and ghost you when they find somebody else or to support somebody and when you come to them support you, they flake.

​

I think o lot us have lower standards and accept it. there are people out there who will support you. just very hard to find unfortunately.

or to support somebody and when you come to them support you, they flake.

100 percent agree on this, friendship is reciprocal. However, keep in mind, that what you're asking, unless you're doing a ton for the people helping you, isn't reciprocal either.

That being said, kudos to you for setting your expectations for friendship and sticking to them. Not enough people put meaningful thought into who they surround themselves with.

I get it! But I rather have a smaller group that are totally solid than a large group who are wishy washy.

Like Albert Einstein said “a good girl is worth a thousand hoes”

If I didn’t have my disability then my standards would be lower, but if we were to hang out, I need to know you got me. I been in situations where somebody will say they got me then they vanished at a party. You can justify it but it’s just a shit thing to do. A simple “hey. Will you be okay?” Goes a long way.

Having a major disability comes with more societal problems that a regular person would never understand.

but if we were to hang out, I need to know you got me. I been in situations where somebody will say they got me then they vanished at a party.

I think maybe lots of people don't understand this part of living with a disability.

Our cultural conceptions about independence are novel, untested (or failing the test, perhaps), and by no means 'natural'.

The idea of relationships being interdependent, life-or-death interactions is much closer to our evolutionary context - it's more 'natural'.

Keep up the good fight, and thank you for being so visible and vulnerable! Much love, my friend. I hope you're having a comfortable day.

Yes! I understand where the other person is coming from.

I know I have more baggage but I have to carry it. I know it’s a lot but that’s my life. I dont put it on people. I talk about what my limitations are and needs before we hang out or something. Then it allows them to say “what do I need to know or do” or “ I just dont feel comfortable doing that”. I respect both answers and try to be accommodating to a sense.

When you are in a wheelchair with 95% movement lost, you would understand. I can’t just go out on a whim and expect the best. I need a plan a, b or c. If I full trust the person then I wouldn’t need a plan b or c. Thats why a lot of disabled people are lonely since we need time to explain and most people dont stick around and find somebody else to spend their time. That’s just reality and the so called “value” of a person.

Like Albert Einstein said “a good girl is worth a thousand hoes”

If I didn’t have my disability then my standards would be lower, but if we were to hang out, I need to know you got me.

You could always lead with the line "My boner is a real bone, wanna see?" Or "The flesh is weak but I am literally hard."

I hope you'll remain in good spirits, degenerative disease sucks. Doesn't there come to a point where you have to either choose to permanently remain in a sitting position or a laying down/standing position? Having to make that choice would be difficult for me to do.

I just hit them with good jokes so they dont see how ugly I am and BOOM I am in there. Respectfully.

There’s a misconception that you can choose to sit or stand. You can’t choose anything. My body will dictate how it want to be. Some people’s legs are in a bent position, some are straight. Same with arms. Some are bent, some are straight.

Ah, that's unfortunate. I'm having a struggle with some kind of neurological issue myself. Doesn't appear fatal or anything, but I now have a complete inability to balance, some sort of weakness in the legs where walking is difficult and painful, and uncontrollable tremors that only benzos seem to quell, and it's been like this for months. Already had multiple MRIs, CTs, blood tests, CSF fluid analysis, everything came back normal.

Still can work though on a computer as long as I can type.

I understand though that people minimize the difficulty of having disabilities. Doing literally anything is hard with a disability, it sucks.

It’s a hidden battle and you do everything you can to maintain that bar you set.

I talk with a lot of people with rare or neurological issues and it’s fucking insane what’s the body is capable of doing. Sometimes science is amazing but other times, a lot of it is still waiting to be discovered. I hope you get relief soon ❤️

Are you able to move your eyes?

rolls eyes

How long have you had that friend? Have you known them since childhood or adulthood?

I know of her for ten years but became super close for 2 years.

I mean this is the most light hearted way possible. What position would you like to be stuck in after your muscles seize.

On a serious note. Can you exercise you’re muscles to reduce the impact?

Sitting would be the best, but I have no control. Some Fopers are stuck in a standing position and need standing wheelchairs.

I can do light exercise but really you can't because exercise can cause a flare to start and bones start to form and you lose movement in that part :/. I may have caused a flare doing curls back in college. My body is screaming to exercise since being weak is not liked by the body. But like I CANT move that body part. My arms want to be used every day to gain muscles. I am 108 pounds of skin and bones at this point

I have what I can only describe as a bone-feeling mass forming between in the joint between my ring finger and hand that is slowly but surely locking it into a curled position. I haven't been to a doctor about it for reasons but...this doesn't sound familiar does it?

The hand doctor is right. If your toes aren’t malformed then you dont have FOP. I could also grow bones in my hands and lose movement in there to :(. My wrist and fingers are the only joints not affected by fop.c

I just briefly googled and read "a brief 4-day course of high-dose corticosteroids, started within the first 24 hours of a flare-up, may help reduce the intense inflammation and tissue edema seen in the early stages of the disease" https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3253727/

I was hoping with your experience you could help me understand a little more about FOP. Anabolic steroids' have been shown to increase muscle mass even without physical activity. You described the flare ups happening when you were exercising and I was curious, does the muscle stimulation/hypertrophy cause the tissue edema or is it the repair process. In other words would using anabolic steroids help you keep muscle mass while you can't stimulate the muscles, or would they be ineffective/harmful?

I think you're an incredibly admirable person for raising awareness and for living your life with purpose. If you don't have time to reply to me specifically I understand, I am one of many curious people here. I hope you find that many people appreciate what you're doing and your courage to share your life and journey through it.

Nobody truly knows what causes a flare to start unfortunately. Sometimes, it is caused by trauma but even then its unpredictable. I could fall down the stairs ten times and nothing happens. The 11th time and flare starts. Maybe even not.

Most of my flares start randomly. Like I will just start flaring then you think of anything that may have caused it in the past few days. I mentioned excercising, but it could not be from it. Nobody truly knows. Most flares were caused by me not doing everything. There were times where a flare I think should start but nothing.

I’m always living in a fear of a flare. I could wake up the next morning in excruciating pain and can’t get out of bed. I dont know what my future holds or how stable my health will be.

The flare is a reaction to “repair the muscle” but instead of muscles, bones just start growing until the body says it’s done “fixing”.

There is an exhibit about this disease at the Mutter museum in Philadelphia, I found it heart-wrenching.

How old were you when you were first diagnosed? Did the diagnosis mark a sharp change in how you lived your life?

Have you interacted with others with FOP?

The diagnosis was a joyous moment! But then it’s like shit. The future looks fucking bleak. I was diagnosed at 3 but if you look at older ones. Most are wheelchair bound, some can’t get out of bed. With technology developing tremendously over 20 years many can work and have productive lives and get married and some even have kids(which I’m super against; to give a child this horrifying disease). My disease will live and die by me. And wouldn’t want another person to suffer this disease hence trying to raise money to find a treatment or cure.

Where are your parents in all of this? How did it get passed to you?

Super random chance. Doesnt run in my family at all. I do have 50% of passing it to my kids so I won’t be having kids due to them not wanting them to get the disease and I dont think I be fit enough to be a dad. I fill all the qualifications of a drunk uncle tho.

Speaking of a drunk uncle, are you able to partake in that type of activity? Keep in mind, I'm walking into this conversation under the impression that you have a daily regimen of medication. I'm only on 2 daily meds and drink much less than I used to, though my other medicinal herbs went up as a result.

I dont take any medications so I’m freeeee to drink. I also can’t swallow so I have a tube on my stomach so I dont taste any alcohol. :) I do shots since its easier to measure and I dont taste so I take the cheapest liquor. Win win win. My tolerance is around 7 shots surprisingly.

You can watch my video to see drunk me and how I “drink”. Or my wedding video to see me on the dance floor.

here

A) that's awesome that you don't take any meds! My blood pressure spikes if i don't take them, then my anxiety kicks into high gear.

B) that's a win win win in my book too! I don't do shots because I'll toss my cookies real quick, and I like my beer, but way too much on my body.

Again, thanks for your time! I'm heading to that video right now!

Edit: I didn't say thanks initially, but totally intended to!

Also, you two seem awesome. If you're ever in Austin, I'd hang out with y'all!

First shot on you!

There is an exhibit about this disease at the Mutter museum in Philadelphia, I found it heart-wrenching.

First thing I thought of. That museum is full of terror, but that exhibit has to be one of the worst ones. Literally torture.

Imagine living it 😂😩😭

Hi,

I know you have hearing aids and so on, is that related to FOP or what? Is there other effects like that unrelated to muscles if so?

Can you feel the muscles calcifying where it's noticeable right away or is it just progressively less motion slowly over time?

While I'm sure this is a big part of your life is there anything you'd like people to know about you outside of this?

Since so few people have this is there a community where you're able to talk to other people who have FOP, kinda as a support network of like individuals?

Hey! I think I know you! Lowel Thomas building?! I mean hey random person.

Wearing hearing aids is part of my disease. the bones in my ears that rattle that produces bones actually fused leading me to severe hearing loss.

I do not feel the bone growing per say, but I can wake up the next morning and feel a solid piece of bone that definitely wasn't there before. Its kind of like sitting on a remote accidentally except its permanent. The feeling you expecting to sit on something soft but its hard just like your MOMMA.

Yep, that's me.

TIL that's how ears work, and I'm sorry to hear that, hopefully the aids help enough that you're relatively uneffected.

You mentioned flare-ups, can you elaborate what that feels like? It's hard to imagine but I figure similar to the muscle soreness?

My hearing is 100% normal with hearing aids unless you talking about a boring topic then I can’t hear you.

So I’m sure you get shot with paint balls. When you get shot, a bruise appears. It’s hard to move your arm if you get shot in the bicep. The swelling forms to repair the muscle. That’s why you take an ibuprofen to remove the swelling to feel better. In my case, the swelling doesnt go away and bones start to form. In the arms is not that painful. The swelling causes the arm to lock. The vibes start to form and as the swelling goes away, I can feel the bones and thus unable to move due to a bone blocking the movement.

So during that timeframe do you try to position yourself into more favorable ways to help mitigate the way that it leaves you?

Or is that too difficult (I figure over time this is something you have less control over)

The disease will do whatever the fuck it wants. I have to go with how my body is shaped. So now I lean more on my left side so I have pillows on my left to prop myself up so I’m not leaning on my left all the time.

I do constantly have to shift my weight because my big butt has bones in it and bones are not always smooth. Some can be pointy and uncomfortable. It’s like sitting on a remote. You can sit on it for a while but you will get super uncomfortable and have to shift weight.

Just gotta say, you and people like you are the world's true super hero's . It's not having extraordinary abilities that makes you astounding, it's dealing with extraordinary circumstances and staying you that does.

“I’m only strong because you see me in the ring for many rounds” I’m just forced to live with this. I think a lot of others are strong too but just have to be pushed into the danger zone if that makes sense?!

I'm so sorry, that sounds like a nightmare! Kinda like having a dream of your teeth falling out and it turning out to be real when you wake up...

I def had that dream many many many times. It’s one thing to think that your life is falling apart or health declining but to look in the mirror and see the destruction and the monster you are becoming is shattering to anybody’s mental health.

You’re not a monster, dude. You’re bringing a lot of light into the world and doing your best and putting yourself out there when many, many healthy adults don’t even try. Can’t imagine the bravery it takes to be in your shoes.

It’s hard carrying these huge balls around. 🥺😰

I feel your pain. Compared to you tho I'm lucky. You're mom comes around to move mine. Do you have a ball handler in ur life? I know a good one.

My balls are not being handled at the moment. They just hanging around till it finds a new home. It needs a nice, warm, cozy place to stretch and rest if you know what I mean.

I can't even imagine. What were the first symptoms you got and how long did a diagnosis take?

MALFORMED TOES is a clear indicator of FOP but doctors just brushed it way. Had bumps(later called flares) and bones was growing. The bumps would go away an nothing happened. Thought to have rare form of cancers/bafffled doctors. Took me 3 years an a geneticist to confirm what I have and now I am stuck with this shit DNA. Qt least I got the funny genes!

I had a patient with FOP not too long ago who also mentioned cancer as a common misdiagnosis. She said that they were about to amputate both of her arms before a specialist heard of her condition and realized what it was. Have you heard similar stories, or had one happen to you?

Yes. Look up Ashley kurpiel! She had her entire arm cut off thinking it was cancer. Horrible outcome.

I was diagnosed with cancer and almost had chemo and that would have caused irreversible damage. I got chicken pox then I was diagnosed with my disease! So saved a lot of damage.

How did getting the chicken pox lead to your diagnosis?

It prevented me from getting the chemo. It bought my parents time and found something that seemed to match the symptoms more of what I was experiencing.

In the rare community, it’s really common to be misdiagnosed and can cause irreversible damage and headaches.

Is there a way to CRISPR that out? Are the genes causing this known?

if you look in my description, there is researching done to to gene editing of some kind. Its possible but a LOT OF RESEARCH is needed plus money. A lot of rare disease are s biggest problems is lack of money to do reseal ch that could potentially fail. HUGE RISK , HUGE REWARD.

Is another thing that's working against you how uncommon the condition is? Like if only one person in a million ever gets this then it's not like there's exactly a high demand to put a lot of person-hours towards solving the problem, right?

Thats the big problem with rare diseases. Not a lot of companies want to invest money into rare diseases due to low numbers. But I have to thank Obama fir signing a low to have tax incentives for companies to invest money into rare diseases.

Even then a lot of the funding is done through families so I appreciate all the fopers and families or people who take the time to organize a fundraiser and raise thousands or millions of dollars to support research ❤️. ^{Tryingtohelptoo. Link in description}

I hope this doesn't seem rude but do you have x-rays? It would be so interesting to see.

Unfortunately I dont. It’s locked behind clinical trials walls. There’s a skeleton you can see online if you type fop body. There’s a museum in Pennsylvania where you can see the full destruction of the disease.

The mütter museum in philly, maybe?

That’s the one! X rays are hard to see because it’s a direct photo. The actually body is 3D so you can see how intricate bone progression is. Way more than an X-ray.

I really wish you the best. Thank you for taking the time to answer these questions. Take care. You are loved! I mean it. My question is pretty simple: how was your day?

Great! I hope you’re doing fabulous!? I want to share the love and give you a hug. Air hugs!

I am \ have been an investor in Biocryst Pharmaceuticals (BCRX) for a long time. They are working on a FOP drug. Right now its called BCRX9250. I know its some ways out, but do you get access to these new pre approved drugs?

Not yet! A drug has to go through tons of research to be be considered taking it. It just passed phase one which means it was taken by healthy adults to prove its safe to take with minimal side effect. If the FDA approves of the statistics, it'll go to phase 2 where FOPers, if I fit in their criteria, to do a placebo test where I dont know if im taking the medicine or not to see if the drug works. Clinical trials take a LONG TIME to study and many of them fail for not helping enough or too dangerous. It's easy to get lots of hope on a drug, but can be quickly deflated if a drug fails :(

Is the "compassionate use" clause an option for you with this?

https://www.fda.gov/news-events/public-health-focus/expanded-access

I looked into it and not an option. My disease isnt life threatening except for a few people. It’s livable. It’s definitely hard but livable. Also the side effects could be catastrophic and make it EVEN HARDER!

The fact that this doesn't constitute life-threatening is disgusting.

Not sure who creates the law. Let’s say the medicine is available, I be wary to take it because of said side effects and unpredictable aspect to it.

With the clinical trials, you have a team to monitor you every step of the way and be told of every medical thing that help. So I feel it’s safer.

I hope if it goes to the next stage that you are in the trial AND not given the placebo. I have read about this disease a few times and it is really horrible. I am glad you are bringing awareness and I hope you can maintain some level of sanity/happiness.

I hope it gets FDA approved so I can do an AMA saying “CURED of fop AMA”

You say they're "turning" into bone, so is this a process that's expected to get worse than it is right now? Is there anything that can be done to slow the progression?

My muscles are turning into bones. I lost 95% of my movement. It can get WAY WORSE. Bones can grow into your nerves and cause chronic nerve pain forever. Bones can grow near your chest and stop the lung from expanding as much. Can grow in your neck and affect your breathing and swallowing. Somehow it affected my ability to swallow and can’t swallow food for the past 5 years.

My future WILL GET WORST unfortunately. It’s just my reality :(.

I saw a lady with FOP and she said she can’t open her jaw more than a centimeter due to a flare up. So on top of not being able to swallow, this disease also makes it impossible to eat.

A lot of fopers remove their teeth in the back to be able to put food in the mouth and also a way for vomit to come out or you’ll drown in your own vomit.

I lost the ability to swallow completely. Right now, I can’t put my finger between my teeth for how small the opening is. Make brushing my teeth super hard. Especially the back. I have a tube in my stomach to eat full meals again. The difficulties in eating caused me to lose 20 pounds and I only weigh 108.

The disease really just wants you to live life as miserably at possible. And there’s absolutely nothing a doctor can do to stop the pain.

Wait wait wait, surely painkillers can help you day to day? Please tell me you at least have that?

I am not on any pain killers. That’s by choice. I just tolerate the pain and it’s a maybe 2-3 feeling. Rather deal with the painful than the weird or awful side effects.

During the worse flare pains when it was a 12 out of ten, I was on nothing. I didn’t have a doctor at the time comfortable enough to give me stronger pain medications. Some other fopers were on Motrin for a little while to help. I was on nothing. I tend to downplay my pain levels at doctors to appear stronger. But I was shaking and having emotional breakdowns everyday and crying and throbbing. I was completely shattered on the inside and had no emotional support.

I was very cool and calm and collected on the outside so people that met me during the time literally had no idea that I was completely shattered and broken. Or how I hid the pain. Absolutely nothing helped. I broke down and had to piece myself together.

Awful. Is medical or non medical euthenasia an option?

No. Not sure where it’s legal. I think Canada and USA isnt. Maybe it’s per state basis like the death penalty.

Do you need more calcium than the average person...? Or less...?

Nope. Diet remains the same. Maybe more alcohol and love to help with coping.

How long does it take before something turns into bone? Like when you move your legs, do they immediatly turn into bone? Can you feel it happening?

I'm also curious, but don't want to make you feel bad so if you don't want to answer my next question I understand. Does this disease kill you, or will you die eventually because of complications you get from the disease?

The bone growing process are called flares which is intense swellings. Bones can grow in a week to 2 years. The ones in hips tend to go down your entire leg so thats 2 years of bone growing, a 12 pain on a 1 to 10 scale. its fucking hell on Earth both physically and emotionally. Having so many emotional breakdowns in a 2 year time span and had to fight it alone because I literally had no one support. And living with the idea that ill never walk again and nobody can do a thing to stop. Only I had to endure all the pain and suffering and keep myself intact while feeling completely shattered on the inside.

The disease won't kill me, but it creates tons of complication like lung faiiilure, body not having enough room to operate. My body is fighting to keep my alive annnd is constantly looking for relief like for me to open my chest to take a huge breath. I am operating at 40% lung capacity.

Honestly, you sound like a fucking champ. Just reading your comments wears me down thinking about even a small portion of it, yet here you are seemingly spritely. I guess at some point you just have to read the cards you are dealt and have to make the best of it, rather than creating more suffering. All the best my friend.

A mantra I follow is life owes you nothing. And god doesnt exist or I wouldnt want to associate with god that could inflict this disease on anyone. There’s no justification to it. NONE.

What's one of your favorite places you've visited? I peeked your instagram.

I hope you followed! My favorite place was Italy. Such a beautiful country. Venice was unbelievabl. Hard to believe a place like that exists thats real and not a movie set. But that was a looooong time to go.

Venice is sinking now lol it might not exist properly for much longer. They are trying a lot of very drastic measures but its frequently flooded and generally sinking, sea levels rising also doesn't help it.

I thought you were suppose to be no spoilers!

Thanks for doing this AMA. I am curious to know how you keep yourself happy and not compare yourself to others' lives? In this age of social media where we tend to put out only good news and not struggles, I think it's quite easy for people to compare themselves to others' highlight reel, or life in general. Would love to hear what method you use to keep yourself positive. I know it's easier said than done.

Keep up the great work!

I will always have those moments of damn I was able to do that and social media can be really damaging to anybody’s mental health.

It’s amazing that everybody is living their own lives and killing it hopefully. I like to surround myself with people who are killing it and who I like to support and a couple cute girls.

It also helps that I have a weirdly high self esteem given all my challenges and things to keep me down so that keeps my groove going.

I do like watching YouTube videos and podcasts and learn about new topics or experiences. I may be alone a lot but I counteract by watching others with different opinion and challenge my beliefs so I dont feel I live in my own reality.

Check our the podcasts Radiolab, Freakonomics, and Philophize This if you haven’t! Good stuff.

Shout out to the no chaser podcast. My ABSOLUTE FAV. Hey Tim, Nikki, and Ricky!

I'm also isolated due to illness and I'm so thankful for all the media I have access to! It really helps take the edge off of social isolation.

It helps! But sometimes I dont want to be an audience member and have a conversation if that makes sense. Like you went on a road trip?! I wanna hear all about it! More interest instead of a like on a post. But of course it depends on the person and if they have any idea who you are 😂

Don’t know if anyone has mentioned Carol Ann Orze yet but she had FOP and donated her remains to the Mütter Museum in Philadelphia. You can go and see her skeleton as well as the solidified tissue that is attached. They actually have another more famous specimen Harry Eastlack who is right next to Carol showing the same disorder.

Great reference for anyone interested in this disease.

Have you heard of these cases before OP? Carols is particularly interesting to me because she was under the care of Dr Frederick Kaplan who is basically the top FOP guy in the world at the only place that does research into FOP.

Super familiar with it. Others have mentioned it. Dr Dr. Fred Kaplan is a saint of a doctor and blessed he started research. Before him was literally nothing.

Now we have the gene and 4 clinical trials happening and 4 more that may start in a few years. It’s a HUGE COLLABORATIVE EFFORT by many families with fundraising to companies putting resources to finding a treatment. Sure there’s money involved but if that means a treatment then hurry up!

Hey I’m so happy to see someone with FOP doing an AMA!!! One of my in-laws has FOP, I believe he’s the only person with FOP to have become a medical doctor (he was the only one at the time he became a doctor in 2012, idk if anyone else has since then), and the IFOPA has been one of my favorite charities for almost a decade. This may sound weird but I actually think I’ve heard of you, I did a lot of research about FOP and the FOP community like 8-10 years ago and.

Anyway, I’m so excited to hear about gene therapy and advancements in treatment! Can the current treatments undo any of the ossification that has already occurred? Or is it only preventative, stopping or slowing the progress?

Hey! I think there’s another doctor but I’m not too sure.

There’s two challenges with fop. One is stopping the bone from growing. That’s HUGE. Another would be to stop flares. That be amazing too.

Let’s say chicken nuggets stops bones from forming. What a blessing that would be. It would benefit the kids because they are least affected and would stop them from getting worse.

For areas that calcified, the muscle has been replaced with bones. Meaning that if you remove the bone, you might not be able to move it since the muscle is gone. It depends on every person but some people may never move their arms again unless there’s a muscle transplant or something like that. If there’s no muscle then there’s no movement.

I HOPE I can walk again and do jumping jacks but I dont know if the technology will be mature enough in my lifetime or i even have enough muscle to use my arm again. Keeping my expectations in the middle so I dont get disappointed but Also room to be surprised!

Can you grow a bone in your wiener, theoretically? The penultimate boner, if you will.

I get a penultimate boner when I’m around your MOM.

My penis is a smooth muscle so it’s unaffected.

Thanks for caring about my penis ❤️ must run in the family :)

What do you do day to day to pass time? As a human, you obviously get bored, but with these extra obstacles, I wonder how you can keep yourself entertained.

Also, have you considered ending it all because of how hard it was?

I have a YouTube channel and podcast so that keeps me busy a lot with editing. Editing TAKES FOREVER. Also work for a women’s charity and do freelancing jobs.

I considered suicide many times. I made a pact that if my life got worse, I would end it. That was years ago. My life got exponentially more difficult. I could not imagine myself to be happy. If I could not be happy now, how could I be happy later when my way of life deteriorated to unimaginable circumstances.

I considered it many times but suicide is very difficult to accomplish. You are so low in life but you need strength to commit suicide. I have huge balls of my own, but it takes huge balls to think of suicide and then commit suicide with all the thoughts going through their mind. Some take the strength to seek help or hope to get better and some commit suicide.

People will say dont commit suicide but dont understand the demons they are facing. There’s a story that a guy is standing on a tall building ready to jump. Everybody is saying “DONT JUMP”. What the crowd doesnt see if the fire behind the person burning them alive.

If you are feeling suicidal, please go for help and I hope things get better you ❤️

Wild stuff man, this was the disease I did for my final project last year. Was always wondering how the bone hardened in patterns if that makes sense? Like expanding from on spot instead of going slowly all over?

Everybody person with fop is different and how it progresses. Some have more arm movement and some less. Some can walk till they are 18, some are wheelchair bound at 8.

Nothing you can do abd hope for the best but really expect the worst outcome because that will most likely happen like being able to walk.

Will this happen/has this happened to your penis? Or wrong kind of tissue?

Your mom likes Kleenex since it’s soft to the touch and easy for clean up.

What is your greatest source of joy? (Besides my mom)

When your grandparents made your mom :)

Getting nudes from women gets me going! Like I’ll be reading emails or texts and I’ll get a naughty photo and I’ll be like how u doin 👀. Then back to work emails.

RIP your inbox (I Hope).

feel free to ignore if it’s TMI—but how does masturbation work? Do you have a machine to assist?

It’s late in the day so it will probably go unnoticed. 🤞🏾🤞🏾

I dont masturbate. I physically can’t so the next girl will be Niagara falled 😂😂

Thank you for being so open! I feel I've learned quite a bit reading this thread.

What are some things you wish abled people knew about disabled people? Two of my siblings and I have an invisible disability, while my stepsister has a visible disability. We tend to have different answers to this question and I'd love to hear yours!

Treat them like normal people, but also respect their boundaries. Also asking before helping someone.

As much as disabled dont want to admit to needing help, we will have to ask for help. So offering like “looks like you need help, how can I help you?”

Or dont ask for if you need a specific thing. Just ask “if you need anything” it’s open ended. Like if you ask “need help moving the pillow” and they say no then a minute later they ask. It creates a somewhat awkward(depending on person) situation that I just asked a minute ago. What happened with that minute?! Like I feel bad that I have to ask when you just offered.

One last thing is dont make the person feel like a burden. Of course it depends on person/personality but if a disabled person asks for something and you like sigh, it makes them(and me) feel bad.

How have you managed the (I imagine quite difficult) emotional impacts? What works best for you?

For one, acceptance. Accept that my past will stay there. I will most likely never walk around again or swallow food again. It sucks but it’s reality.

TThe second part is now what. Try to find something to make you productive and give value to yourself so I started a YouTube channel and podcast to fulfill my creativity and to put energy towards something.

My self esteem was non existent but I have high self esteem now to put myself out there and be open. I have nothing to lose at this point and everything to gain on my terms. I want the world to know who I am so I highly motivated to do that.

The other thing is have goals. Short term and long term so you have something look forward to and work.

You've noted numerous times that the disease is torture and will only get worse. What is your stance on euthanasia? Is that something you would consider if it were legal/available?

Thanks for doing this ama. Very interesting to learn about something so few of us know anything about. Stay strong. Hope you know you have a massive community here wishing you the best.

I think self euthanasia should definitely be an option. I dont like the mantra that we have to save everybody no matter what shape they are.

Could I do self euthanasia? I dont think I could. Its terrifying. In my worse moments to say kill me, you would have to do it immediately. I couldn’t just file up all the paperwork to do self euthanasia. By that time, I would maybe have hope or something to look forward to and stop the process. Rinse and repeat.

How long you have to live?

Long enough to write this comme

Is it possible to “break” your bone to give yourself the ability to move a bit more?

I can break a bone but more bones will just firm. The other thing is the bone have to completely removed for movement. A break may help a little but not too much.

I can break a bone but more bones will just firm. The other thing is the bone have to completely removed for movement. A break may help a little but not too much.

I can break a bone but more bones will just firm. The other thing is the bone have to completely removed for movement. A break may help a little but not too much.

I can break a bone but more bones will just firm. The other thing is the bone have to completely removed for movement. A break may help a little but not too much.

Have you ever met anyone who has the opposite condition, where the bones turn into some other kind of tissue? My neighbour has that :(

Thanks for sharing, I will donate to the research

Thank you for the contribution ❤️

I have met ppl with ehler danlos syndrome and their bones are breaking and constantly getting dislocated and I’m like I have all the healthy bones you need! I can donate some to you! (I can’t)

Are you afraid?

Yes. I’m afraid that when I sit to pee, a snake will come and bite my dick. 😰

Snake dick bites are no joke

Do snakes attack anacondas?

Have you heard about the book The Iron Prince? Sci-fi fantasy book about a guy who has this same disease.

I have not!

If I didn’t have ppl calling me Joeysooch or daddy then iron prince or iron king would be a great name!!

First big respect by looking on a bright side of life. How does your treatment look like and ho effective is it?

Research is being done! Clinical trials look promising but no medicine has been FDA approved yet! Hopefully soon but it is still years and years away unfortunately.

These companies have said the medicine are up to 90% effective in bone growth in mice. Now these companies have to do clinical trials have to prove its effectiveness and safety to be fda approved. It’s promising but a large percentage of trials fail at phase 3 for its effectiveness or safety unfortunately.

You’re sense of humor is amazing. Have you considered trying to be a comedian?

I have wrote privately but I put my humor in my videos. I will eventually get on a stage but unfortunately I’m banned due to being unvaccinated and also having enough balls to get on a stage and kill it. I got a little sweaty now thinking of it now and I’m in my room😂

have you ever broken a "muscle bone"?

Yes I have in my thigh. For a split second, it felt amazing then it incredible amount of pain and shock went through my leg to my feet and numbness. It was during a flare where my entire hip to my feet was swollen so the pain just shot everywhere and couldn’t leave my bed till I really had to like the bathroom. It was fucking brutal and I was just shaking uncontrollably for months.

I went to high school with someone with FOP. I didn’t know them well, but always wanted to ask- what is partying/dating like in your life? How does it affect you socially?

When I had my full use of my legs then I went to parties. I lost one of my legs but could only walk short distances, I only went out when I knew I was cin good hands. In college, I went out less than ten times. I wanted to go out more but stayed inside for my health. It’s unpredictable out there and couldn’t risk it the unknown. It sucks but I did what’s best for me. I had to watch everybody go and have fun while I drank alone. I was surrounded by people, but I felt really alone in college.

Now my condition has deteriorated so badly that I have to know that the person has me 100%.

My dating life is non existent. I’m cute but I have a monster of a body and so called baggage mixed with having less “value” than the next person makes it difficult to meet new people. I totally get it. I have a great personality but people just aren’t attractive to me.

Is that what boneitis is?

If that’s the feeling I get when your mom comes around then yes I have boneitis.

Hey man thanks for the read, it's the first time I've heard of FOP. Do you perhaps have any x-rays of what it looks like on the inside?

Locked behind clinical trial walls unfortunately. I would show them if I had them. I would love to see it too!

All I can help is imagery. Take a normal X-ray then have a kid with a crayon and have a kid draw with it. That’s how my body looks with bones.

Do you ever refer to it as "Bone-itis"?

No hudgepudge

Is the movement of your eyes affected?

Nope.

The tongue is the only striated muscle with an origin and no insertion. Not a smooth muscle. So hopefully it’s not affected too?

Tongue is actually unaffected. My jaw is so I can fit only a pencil between my teeth.

Not sure if you are still answering questions, but if you are, do intend to let the disease run its course, or do you plan on partaking in PAS(physician-assisted suicide). Also, how did you meet your wife? How did she deal with the news of your illness?

Wife? Huh?

I will live till my heart gives out or till somebody shoots me because I said “what you gonna do, shoot me”. 🔫

You mentioned heart and tongue. What about your diaphragm?

No. But bones can grow around it to make it harder to operate. I know a chest is a cage but my chest is a closed in cage. My shoulders are folded in. I would say 4 inches is closed in due to severe scoliosis and fuckery of fop. I’m 5 feet four and I should be closer to 6 feet in height.

I know that removing the bone can trigger a flare and it usually grows back, but I was always wondering, when a person with FOP loses mobility in a limb and it gets stuck in a position that makes functioning difficult, is it possible to medically break and reset that limb so that quality of life is improved?

If it is truly terrible way of life like I think one had her neck looking downward so they did surgery so she sees straight. Otherwise no surgery is done unless it is life threatening like putting a tube in my stomach or a tube in your throat to get oxygen in the lungs or you will die.

The benefit has to be greatly positive to worth the risk. Fop is too unpredictable to challenge it. You can start a whole chain of flares and cause even more complications.

My understanding of this condition is rudimentary at best, but...since muscle turns to bone if it's injured, does that mean even tiny tears consistent with strength training will do damage?

I'm glad to hear there's progress being made. I often thought this was one of the scariest things to have going on with the body. I'm going to follow you so I can better understand, in case you can't/don't respond. Tons of love, and thanks for sharing your story.

If I do regular things like walking or even running, I would say no. But the hard part is the unpredictability. I can run a mile and be fine then weeks later do nothing all day then have a flare the next day with no cause or trauma anywhere. The flares just starts and bones start to form. That what makes it scary because I can be fine today then in a lot of pain when I wake up.

This may come off cold but I'm only trying to make light of the situation and your title made me think of it.

Have you ever heard the ELO song Turn to Stone?

I have not. Have you ever heard of this song He’s an up and coming artist.

Have you heard of Shannon Larratt, who suffered the same condition as you and wrote about his experience? Or found strength in the experience of other sufferers?

I’m not familiar with that name. Are you sure its the same disease? I tried finding her and couldn’t find anything.

I met others with my disease and a lot of great people but I just never fully clicked with them. A part is my fault since I dont like doing large social gatherings and get super shy. M

At the end of the day, we have the same disease but different personalities and I guess mine doesnt mesh well. We do support each other in advocacy since we all have the same goals on finding a cure and spreading awareness!

So it's literally greyscale from Game of Thrones?

Not really. It seems more like butterfly disease.

Dang, I thought Gorgons went extinct ages ago, where did you find one?

In all seriousness though, I'm glad there's a cure, FOP sounds like a horrible fate. How does it affect a sufferer's life expectancy?

Correction. There is no cure there are clinical trials to prove if they work or not.

It can affect life tremendously some died when they were 15. Some in their mid 20s. Some live all the way to 70 so a huge span of ages. But the older a person gets, the worse they become and in more pain. Along with getting old has its own set of problems.

Hey there, question if you're still around here answering. What's the possibility of prosthetic limbs for someone with your condition? if the entire limb is removed and replaced with say , one of those arms that are controlled with your brain kind of like this example

https://news.umich.edu/its-like-you-have-a-hand-again-an-ultra-precise-mind-controlled-prosthetic/

It’s a super interesting concept actually. The technology is new and cutting edge. It’s a weird situation like hey well cut off your arm and put this one and you’ll have some movement or it’s limited.

Also it’s tricky because surgery causes more bone to grow and it could affect the effectiveness of the arm.

I always debated to cut my legs off since they are frozen straight that it would allow me to get in cars easier and wheelchair but then again I wouldn’t walk again and have the phantom feet so it’s super hard and no going back!

Would you do it?!

hey thanks for the reply .

Also it’s tricky because surgery causes more bone to grow and it could affect the effectiveness of the arm

This is exactly what I was wondering as well. But if there's no tissue there for it to turn to bone, would it matter? aside from where the cut and surrounding area is of course.

definitely an interesting concept, i hope technology gets to a point where it could be a real accessible option . Hard to say if I would go through with it , I guess if there was a chance of me being able to control the legs with my brain once i get to the point where i cant walk anymore. But if you are able to walk right now then definitely not.

The technology just isnt there yet. Most probably not in my lifetime. I’m betting on there being a treatment to fix me before that technology is fully operable.

If I’m at the end of my life with no treatment then I’ll hit you up!

You said in the OP that the treatments being developed aren't likely to help you, why is that? Does it need to be treated early, or is it related to the reduced life expectancy?

The disease causes the muscle to replace by bones. There may be some body parts like my arms that I can’t move anymore if I take the bones away because the muscle isnt there. It could be there but very small or just not there.

So even if I had the treatment tomorrow and got surgery to remove every extra bone, there will be joints I can’t move and it just be jello. Finding a treatment is one half the battle, the other is surgery and if it’s worth it with the risk. Everybody person is different.

The treatment would help the younger kids because they still have normal bodies or half normal and could stop progression.