My name is Joseph Suchanek and I have an extremely rare disease that only 800 people in the world have called Fibrodysplasia Ossificans Progressiva or FOP or "Stone Man's Disease" where my muscles and tendons turn into bone. AMA

Please donate! $10 can go a long way. My disease is a science marvel and doctors are trying to find a way to control the gene so they can give this gene to people with bone loss or broken bones. All my bones that have grown are healthy. It just all the bones are not needed and disabling movement. My disease can be turn into a treatment in the future.

I don't mean any disrespect, I am genuinely curious. How do you FAP with FOP?

MOMMMMM can you come here for a minute?!?!!

Will my comment help you sleep at night again?

If people up this question more then I will answer your question.

My sister had FOP until she passed away. She lost her balance and struck her head. Always watch your balance and protect your head man. I am about to participate in a clinical study run by UCSF, sending them some blood for them to do genetic testing on. They are basically studying skeletal diseases and would like samples from persons having or related to those with FOP. Anyway, just wanted you to know people are working on it (though you are probably already aware). Was great to see your post. Keep spreading the word and hang in there.

I heard about your lost and I am very sorry for it. Anyone that has FOP who passes, we all are told and we all send our condolences. Thanks for helping in any way you can. I greatly appreciate it!

Can something such as your lungs or heart turn to stone? I'm sorry, it's a horrific question but I needed to ask

No question will be left unanswered! My organs will be fine and nothing will ever happen to it. It's just the room around it is constricted.

Here's a pic of me when I was 7,8,9ish http://imgur.com/2vZ798y

Another fact is that when I get flare ups, I do not know what the outcome will be. I could be lightly disable or heavily disabled. There is no way to stop the bone from growing. The bone will stop growing when the body will stop growing. All FOP people can really do is pray that the damage is miniscule. It's hard to say positive when you really know that your mobility is gonna go downhill from before the flare up happened.

Any idea what would happen if you had a calcium deficiency with these flareups? Are there any surgeries that can fix any possible future mobility issues? I mean if they can remove a piece of someones skull it would seem like they could remove some of the bone growth or shave it down.

The bone can be removed. That's the easy part. The problem is that bones will grow back and become even worse so I'm just stuck the way I am till the treatment comes!

My cousin Ashley has the same disease...what's more, she underwent an unnecessary and harmful amputation as a toddler due to a misdiagnosis of cancer. When she has all the right in the world to be angry and bitter, she is instead one of the most inspiring and positive people I know; whenever I start to complain about my shitty first world problems, I think of her and I feel like a right bastard for being such a twat.

I really hope this new treatment in clinical trials is effective. You guys deserve a miracle. I don't have any questions for you: just wanted to commend you on your bravery. Good luck, and love to you and yours.

Thank you and I know who you are talking about. We are good friends and we talk from time to time. She definitely inspires a lot of people and I look up to her sometimes.

FOP and a mets fan? I'm sorry man.

-a fellow mets fan

I'm actually a hardcore Yankee fan. Mr. Met was at my school and I just wanted a pic to be cool. The Yankees should really have their own mascot btw

I vote for this guy to be the yankees mascot.

Tell me where to send my resume. Haha

I really wonder why I am getting votes down. Is it because I am a Yankee fan? Damnit. I knew it. 22 votes down are Red Sox Fans.

nothing personal boss, its just how reddit works - some stupid computer that tells you that people are voting you down to trick them into voting you up while they hide the real numbers until its too late for people to care

Haha thanks. You don't know who to trust these days. Even if I don't make it to the front page of Reddit, I am happy to spread awareness and give people hope that even when life keep throwing obstacles at you, you conquer them and keep going! Like the Energizer battery. Haha

My old next door neighbour suffers from this, she went to the best Uni in the country and now works in the biomedical industry in London, so don't give up hope, even with such an awful disease you can still do great things with your life.

http://www.thesun.co.uk/sol/homepage/news/4334267/Lucy-25-is-turning-into-a-human-statue.html

Thanks for the post. It's really odd that she didn't show symptoms till she was 15. Most people show symptoms at the day of their birth or in their early years.

Best of luck with everything and I hope you get your treatment :)

Thanks a lot! :)

I just donated $10 to your cause. Hopefully it helps in the long run. Stay strong brotato!

Thanks man. Really appreciate it. Air hugs!!

I've gotta be honest here. You're AMA is much appreciated by me, but it makes me incredibly sad for myself. Hear me out. I'm a 27-year old relatively healthy man. I can't say that I wake up every day with my future goals in mind, but you've managed to seemingly do that despite your condition. What's sad for me, is how I take my health for granted, allowing myself to get down at small pebbles, when, you've leapt over boulders. Tomorrow I will wake up and feel so wonderful having read your thread, because of how great your optimism is. You truly are inspiring and thank you for being so candid about your condition and your life. Take care.

Edit: fixed my word usage.

Thanks appreciate. I would give you a hug to show my appreciation.

What's your major? If I'm not asking too many questions already

I love all the questions. Don't worry about it. I'm a Communications Major specializing in Public Relations. In saying that, I really don't know what I want to do with the rest of my life yet.

what do your x-rays look like?

do you have a gf?

have you had sex? will your parents get you a hooker if you ask?

My X-rays is like a normal skeleton, but with many bones in places that shouldn't be there that could be a real health hazard to me. Like my chest is constricted not allowing my chest to fully expand so I get tired when I do strenuous activity. I never had a girlfriend. I am currently a virgin and I don't discuss my sexual needs with my parents. I could get a one night stand in college if I really tried, but I tried to have someone that really like me and not just feel bad for me.

Please follow my campaign to Stop FOP on twitter at @StopFOP. Love you all!

Do you fear a potentially early death?

I fear that I will end it myself before I can see the real joys of life and I really want to be able to experience it all. I have a list of things I want to do before I die and I am really hoping to accomplish every single one of them before I die. http://imgur.com/lNdAlky

Wish I had time to ask you more. Last question(s). So, obviously treatment would be expensive and possibly not covered, so what if there was an experimental new treatment that hasn't seen rigorous animal testing yet, but what it has seen in testing shows it to be super effective; Would you take therapy in the interest of getting treatment sooner and saving a bit? And lastly, where would you hope to get this new treatment, would it be a medical university? I ask this because I'm really interested in how much it would cost.

I'm not planning on going anywhere so ask away whenever you want! I definitely would take the chance to get the treatment because results have looked to be looking good right now. I have no idea how much it will cost, but I will be more than happy to take loans out and pay for it because it will be worth it plus I think a lot of the FOP people will get a lot of hype and air time that people will want to help those who are less fortunate since the stories will be life changing for them and inspiring to the rest of the world. All the Research is being done at Philadelphia School of Medicine led Dr. Kaplan and his team of researchers. I have no idea of costs, but I will pay anything or do anything to receive the treatment.

I don't have a good question but I wanted to thank you for exposing a opening yourself up in this type of forum. I'm taking my nursing school boards in a month and its stories like yours that motivate me to keep going so that maybe I can help someone like yourself in the future. Thank you again and good luck, Go science!!

Go science!! If there is anything I can help you with, I can give you my email address if you like?

Wow, thank you. Like I said I don't have any questions right now but I bet I would wake up with 50 tomorrow. Don't want to seem insensitive but the human body is fascinating to me, especially when it doesn't work the way it's supposed to.

I think it's fascinating to and sometime I can't believe what I see in the mirror. The human body is a wonderful piece of machinery.

Any question is okay! I knew what I was getting into when I signed up for this!

How old were you when you were first diagnosed with FOP?

Two years young

Woah, that seems pretty young. How were you raised with this disease? Did your parents make sure you knew everything about it, or did they hide the details from you until you were older?

Good question. At the time, science wasn't as nearly as advanced as it is today. Think about it. The Internet wasn't really all that big at the time and the disease was so rare that there wasn't really anywhere to go to. As I grew up, I didn't think there was anything wrong with me until I started seeing myself of how I was different to everybody else. My parents try to protect as much as they could like putting me in a private school and try to keep me from harms way. To answer your question, I just grew up with it and never really asked questions except why me? I didn't do anything wrong to deserve this. I had to become really mature about all of this like when I was pretty young and was hit with the harsh reality that I just had accept myself and go on with life.

Please provide proof Joseph that in fact you have FOP.

How do you take notes and do tests in class?

If you explain how to put a photo up then I will gladly do it. I am able to position myself to be able to write a desk like everybody else, but a laptop also works too

Ok so take a picture with either you laptop or phone.

If by laptop then go to www.imgur.com and click the "computer" button underneath "Upload Images" After you selected the picture click "start upload" then wait till it's uploaded and copy the url.

You can post it as a comment or edit your original post and put it in there.

Thanks. Just put it in my description

Not sure if I'm too late for the AMA but can you control it? Like if your leg was flaring up put it in a brace to hold it straight so when it's done it stays stuck straight? Instead of stuck bent?

Yes. It would stay straight but like a leg flare up lasts up to a year so to be in a brace that long must be uncomfortable and probably pretty painful since your body is forcing you to bend it.

What's your greatest fear?

In my lifetime to not be able to do the things I want to do before I die like rock climbing. I am hoping that the treatment will allow me to do that.

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This is the best post yet! Have a good outlook on life and don't worry about the little things. There's no point in worrying about the little stuff. Everything will work out for itself. Life just throw curveballs at you from all angles and life can take you to places you never been before. The best thing to do is take everything as an experience and use it your advantage. I try to be like everybody. Normalency I think is key. If everything treats you normally, you almost forget you have a disability. Like if you wear a watch for a long time, you just sometimes forget about, think you lost but it was on your wrist the whole time. With people to help/support, just be my friend. I enjoy being in the presence of others and laugh and grow. I know I have traits and experiences that very few can relate, but it doesn't mean we can't be friends. I want to be everybody's friend. It's about personality too, like for me, I want to be around people but some people are just grumpy and rude. With the general public, just let then to their thing. I havd or may have a different way of doing things. If I need help, I will ask for help and I'm sure that there is a nice person around that is willing to help. To be helpful, just put a smile on your face and be a good sport about it. You can even come to me and say hi and start a convo. I don't bite. I understand I come with a role to inspire people and why not just do that by going out and having a good time and just reaching out to the people whether we become best friends or strangers again the next day.

What does it feel like while the bone is growing? There is a scene from the Harry Potter books during which Harry takes a serum to basically re-grow his bones after having broken all them, and I always wondered what it must have felt like. I will keep my fingers crossed that your treatment works! Thanks for doing this AMA :) '

It feels like something is being pushed into your muscle slowly. It's the only disease in the world where one organ turns into another in some shape or form. And thanks for the support. If you want to keep to date please follow the twitter @StopFOP for continuous updates.

Hey man I've seen you around campus and could always tell that you had severe scholiosis, I just didn't know the real cause for it. I wish I could donate some money but unfortunately I'm your typical broke college student. However, if you do need help around campus I'd gladly do anything I can, just PM me.

I think I have an idea who you are? Andrew? Message me on Facebook

So saying that this potential treatment works, Have any doctors talked with you about the ability to reverse changes that have already occurred (like removing bone growths or whatnot)?

The treatment will stop new bones from growing so the next step is getting surgery to remove the excess bones. The recovery time will vary from person to person with FOP, but I have severe scoliosis so like that will take over a year to just be in a normal position for being bent for so many years. The road to recovery will probably be long and and I won't record full mobility, but it will definitely beat the situation I am in now. Believe it or not, I'm in the better positions of people with FOP. There are people who need constant help with everyday life. Some people are so stiff that can't stand up or sit because the bones in their hips is preventing them to bend

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Thanks so much. It means a lot

So... how does it progress? Was it just random that your elbows are fixed early?

Was it quick when your elbows siezed up? Overnight? Days? Did you get a warning of any sort - like, this could be my last day of moving them? Did you choose them to lock at 90 degrees, is that a least-bad position?

Which bits of you are least affected?

Like I mention with a flare up. A normal flare lasts up to eight weeks. The bone can grow right away fast or over a slow period of time. With my arms, I was a young boy, 7 or 8, there was some swelling in my elbow and the very next day, I could not stretch them out anymore. Like I said I was young so I don't really remember the day, I just remember being able to stretch them out and a span of time later, not being able to stretch them. It must have been terrible for my parents to watch their son being transformed and there was absolutely nothing they could do except watch. It brings me a tear to my eyes for having them go through that. They are good people and I love them very much with all my heart. I always want someway to pay them back and show my gratitude towards them.

And to pick a position of how to us hard because the gene does whatever it wants and you have no control all over it.

From the bits that I can remember I will try to form my question. If I remember correctly FOP was something like an autoimmune disorder coupled with a genetic mutation, right? So if the problem is actual bone forming in the muscles (presumably do to exercise or injury), then are osteoclasts and osteoblasts forming there too? The reason I ask is because I'm curious as to what type of treatment they'd like to test. Off the top of my head I'd think that they would want to selectively kill off osteoblasts in the affected areas while keeping osteoblasts alive. Sorry for my verbosity, I'm very curious

I'm not a medical expert and we have two copies of each gene. One of my repair genes is damaged thus creating the bone, the treatment would be to disable that one damaged gene and stopping the effects of FOP. A possible treatment is called sIRNA to silent genes. A mouse with FOP was actually cured a couple of months ago so progress is being made!!

Have you had to change your life goals and dreams because of your FOP? How does a person handle knowing that they won't be able pursue them?

It's a very hard thought to process. There are many things I want to do, even the little things like give people hugs and not being limited by my physical self. I have a lot of hope that the treatment will allow me to maybe not do all the things, but most of the things I want to do in life, big or small. Don't get me wrong, there was sometimes many hard days that I just wanted to kill myself and people didn't want to hang out with me because I looked different and called me names. Middle school and high school was brutal. College is much nicer, but you can never escape assholes. They don't know the pain that they can cause to people by saying mean things. I'm a very nice guy and you ask me any question, but to make fun of me behind my back and I hear it then you can just go and die.

Since my body is changing every few years. I have to keep crossing out things that I was able to do. I always wanted to be a lacrosse player, but I know I will never be able to be one. I have the personality and drive to be with them so I find myself hanging out with a lot of lacrosse players and athletes in my school even though I can't physically compete with them.

Are you in contact with others with the same disease? Is there a support group?

Yes there is. There's a private support group where we exchange ideas pf like how to get dress and how people dealt with situations and support each other through hard times. Should I elaborate more?

do you have any regrets?

That's a tough question. There's always that(before I get the flare ups) that I should did that or done that. I don't really have any regrets. I try to focus on the positive. Sometimes I get very depressed when I see people on the street and be like I was able to do that. It was fun while it lasted. Ill post a picture of when I was younger. Hold up a sec.

youre a super cool dude! I like that you look to the positive. I gotta be honest, though, I was really hoping you'd say your only regret is that you have boneitis. Futurama reference

Thanks bro. Don't get me wrong. I went through some shitty times and I just felt like I was alone and just didn't want to live anymore. Life is like a jump rope-up down up down. A lot of down, but I try to make the best of it because I know I have one life so live it up!

Thanks for the AMA! I have heard of FOP and read about it over the years. I'm happy to hear of the upcoming clinical trail and the success of recent research. Do you suffer from chronic pain? If so, how do you manage it? Also, have you ever broken any bones? All the best to you. Im going to check out your fundraising page and ! will be sure to recommend it to my friends and family:)

Thanks so much! I would give you a hug if I could! I don't have any chronic pain or any pain at all. I use to get pain in my back when I was younger. I guess my body got used to it and gained a high pain tolerance. I have never broken any of my bones.

Do you wear orthotics?

I wear any shoes I want. Converse are my favorite and most comfortable!

Are there any measures you can take to prevent bone growth? Anything that accelerates the process?

There's nothing that they can speed it up or stop it. You can take prednisone which makes the flare ups easier to deal with since it eliminates a lot of the swelling, but it comes with a lot of bad side effects. The prednisone does not stop the bone from growing though.

You are living my nightmare. I'm not even kidding. Props to you.

It's a nightmare, but there's always a rainbow after a rainstorm.

Do you have a special diet of any kind which minimizes things which aid bond growth? Calcium for instance.

Nope. I am on a see food diet. Anything I see, I eat!

What is your dream job? And good luck for the future :D

My dream job is to help people. That really makes me happy. I don't really know what I want to be when I get older. Was thinking of bring a public/motivational speaker or just live with my parents for the rest of my life haha(joke)

Is there a limit to how many muscles and tendons will turn to bone? What happens when the max amount of tendons turn into bone...how will you be able to stand or do daily functions?

The reality is that there is nothing you can do. Your whole arm or leg could solidify. Just think of the body part being in a cast and you can't move it. There is no limit at all! A guy donated his body to masseur and the only muscles he could move was his lips then he does before the age of 40.

You will need human help for the rest if your life. I'm very lucky that I could live independently in college for now.

Do you type with both hands or just one?

I guess a better question is what's your typing/keyboard/computer setup?

Normal laptop. Normal iPhone 4. I type with one hand but I type pretty fast since I mastered the art. Would be weird to type with two when the time comes.

Have you seen this documentary?

http://www.channel4.com/programmes/the-human-mannequin/4od

I have seen all of them. All of the stories are heartbreaking, they are all good people who don't deserve all this pain and discomfort and I wish I could help them.

What happens when the disease reaches its climax?

There is really no climax. It will keep going until you die. Most probably from heart failure.

Hi, I'm currently a student working in a bone research laboratory. Other members in the lab receive funding from the FOP Society. I've got to say, the people of that society and their families are incredibly positive despite the condition and forward-thinking. It's people like you and your families that enable hope for others with rare disease like FOP thst are traditionally too rare for pharmaceutical companies to tackle.

Thank you for all that you do. I hope we can make the breakthroughs and therapies in my lab soon.

No thank you!! Your work is very much appreciated!!

One of my past neighbors actually had this, as well as you do. She lived a normal life with two daughters. I know you will be okay and I have faith everything will work out. :)

There's no normalcy in a life of FOP. You just have to accept that you are different and use it to your advantage. A year ago, I had to get a license, I was in and out of the DMV in ten minutes. If I was somebody else, probably would have taken me 3 hours just standing in line. Hahaha

so... what happens if someone punches you? not to say you get punched a lot, just curious haha. Would it hurt you or them more?

A friendly punch is find but like a punch in like a bar fight will not do me any good to me at all. I have a good and fun personality so I don't think I will be in a bar fight any time soon. Haha

How do you scratch yourself?

Hands. Back scratcher. Any wall closest to me haha. The challenge is to make it look like cool.

How badly would it hurt someone else if you punched them

I experience the beginning pain the same as everyone else but it will lead to a flare up then bone grows and viola it's over. It's definitely more painful during the flare up

Nah I mean like if your muscles are stone then wouldn't hitting someone hurt them like hell?

Then it's like punching a wall of bone. I think it would hurt for me because its not natural. Try punching your pelvis. It's not really pleasant and feels weird.

Sounds like you're living well. Awkward question. Do you consider fop a disability now as you're living your life or will it become a disability as it gets in the way?

Yes. You can say that. There comes across some hardships. I thought of it as a disability always, but I was always able to take care of myself and relatively do anything I want. Now with my flare up in my leg, that could change and I will be more limited of what I can do. You being able to walk or not able to walk is a life changed and affects every single for the rest of your life till the treatment comes along.

You sound like an amazing dude, what has helped you get thru this all?

A lot of music and my determination that something good will happen to me when I get older. There was a lot of dark times especially through high school. I just felt do alone and different than everybody else and I just wanted to fit in.

Kimimaro?

I don't know what that is

It's a reference to a character on a show called Naruto, who uses.. bone ninja arts I guess..?

Sorry. I am not into Anima. I like shows that have real actors with a few exceptions like Family Guy and Archer. They are hilarious!

Just clarifying haha. Hope you have good luck with finding treatment, man.

Thanks a lot man.

I know someone with a disease called scleroderma. Your Skin, tissues and organs all solidify over time. She is undergoing chemo to kill the bad cells while her good blood is harvested and then re injected into her body. I'm curious to know if they will find a similar clinical trial for your disease is the near future. I sure hope they find something.

The treatment needs to silence the gene that is causing all of this then FOP will be over. Cancer and other diseases are different. Mine is purely genetics

Oh my goodness, I know you. I was in the room next to you on the first floor of Champagnat last year! Marist Red Foxes all the way!

Dan?

I saw a documentary on this when I was a kid, it scared the ever loving shit out of me. There was a woman who typed using chopsticks, because she could really only move her fingers.

Just to clear it up, how much motion do you have and where is it predicted to get limited to?

Also this sentence is hurting my brain, though currently I am very tired:

My chances of not being able to walk are very slim

So you should be able to walk forever? Sweet.

With my left arm, as you can see in the picture I put in my description, I can reay only move the wrist. With my right arm, I can extend it a little outward, but able to touch my face up to my forehead. There is no prediction of how bad it could get. Even the doctors doing the research can't. It's unpredictable! What I meant in my last statement is that the flare up is in my hip and leg and if bones grow in my hip, I could only be able to stand or sit. Not both. You would think standing is better, but sitting is better since someone can wheel you around. I'm in a wheel chair because the flare up is just so painful to put pressure on.

My only regret is i never cured my boneitis!

Sorry bro bad genetic lottery

The only time I did not want to be a winner. :/

How about some real proof, like a picture of a piece of paper with you and your username on it.

Is that really necessary after all the questions I'm answering?

If people vote this up to the top then I will upload one, deal?

My God - that is horrible. I applaud you for sharing your story, and I truly truly truly hope, however useful that may be - that you can find a way to heal/cure this

It may not mean much, but I believe in a will/way mode of thinking and I encourage you to try everything you can to alleviate things.

Thanks you!

Try some eastern approaches. When my mom had pancreatic cancer, but was yet undiagnosed, an accupuncturist looked at her feet for three seconds and announced, its your pancreas. She had been in e hospital for three months with the drs telling her it was all in her mind, that she needed a Shrink. Then when she had the treatment, she left him totally free of pain. Have you tried some of that approach? There are some amazing healers out there. In Hilo, Sara west is gifted. I was thinking to fly there to see her for tremor....

I know what you are talking about but it's all in the mind. Science is real and the only thing I will ever trust. All that vudu magic is just a big waste if time and money and they scam or they are just crazy.