I am the real Mr. Glass! I have brittle bone disorder, Osteogenesis Imperfecta, and have fractured around 250 times in my life. AMA

How do you get diagnosed?

I was born with 22 fractures. So I was diagnosed at birth.

Do you wanna buy some chocolate?

No thank you.

What is one thing you wish businesses better understood about making it easier for someone in a wheelchair to visit their store, restaurant, hotel, etc.? i.e. Why do they hide or place elevators so dang far from everything!

Retail businesses could do a better job keeping isles free. Also it would be super helpful if hotels wouldn't keep putting trash cans in front of the exterior elevator buttons on each floor. Wheelchairs can't access those buttons when that happens. It seems like thats standard for the hotel industry. As for why elevators are so out of the way, I guess its because the shaft can't run up through main parts of the building so they keep them on the perimeter.

Do you become friends with ER doctors after a while or do you have some kind of at home broken bone kit? Does your health insurance cover this?

I have pretty good insurance now through my job, so yes. It hasn't always been that way, and to be honest I don't know if I will always have insurance either.

As a kid I did develop a very close relationship with my orthopedic doctor and his staff. And yes, many of us with the more severe type do learn to handle minor fractures at home. Especially if its a bone we've broken in the past.

What is your job?

I work for a large IT consulting company.

What kinds of technologies? Linux? Windows?

Iv'e been writing code on a LAMP architecture for about 16 years. But now a days I work in technical marketing so I only really get to dabble in HTML. But many times on the weekends I play with PHP/Python.

How has your life changed since Unbreakable came out?

I have my own one-in-a-million condition called Cleidocranial dysplasia, and we got our first representation thanks to Gaten Matarazzo from Stranger Things. It gives me a reference point for other people, and it's vastly increased the amount of information about my condition, which is exactly what we needed. Has your experience been similar?

My life hasn't changed at all except it's easier for me to explain my disability if they have seen the movie. Unbreakable isn't as recent or popular as Stranger Things so I imagine you have a bigger impact.

How easily do your bones actually break? Is it like you could awkwardly break your bones while having a chat or something like that? (Might not be the best question)

This is a good question. My bones fracture less now that I am an adult. A majority of a person with OI's fractures occur before puberty when the bones are still developing. After puberty they strengthen and the fractures are less. I am still not able to walk. But can be a little bit less careful now a days. But in the past I have fractured from something as small as coughing or sneezing.

But in the past I have fractured from something as small as coughing or sneezing.

God damn dude, that's nuts!!

Flu season must be a nightmare.

Yes it really is. I get the flu shot every year and try my hardest not to get a cold.

When you started getting your first boners, did you know it wasn’t a bone or were you too afraid to wank it for a while in fear of fracturing your penis?

Its comments like these that remind me how special reddit is.

Do parents have to take special precaution during pregnancy and birth if they know their baby might have OI?

Yes, I believe the recommended strategy is a cesarean section.

Last weekend Dr Krakow seemed to say that c section Can be more traumatic than vaginal birth. Not sure I'd agree with that

I think it depends on the type. I was born with 22 fractures with type 3 and through a section. I can't imagine what a vaginal birth would have done for me.

Do you feel your condition is fairly represented in the movie?

Yes. Like I said Price has the least severe type, and I think they have done a decent job getting most things right. However, I know many with OI are not pleased being associated with a villian. But in reality having a disability does not guarantee that you will also be a saint as well.

Seeing as this thread is somewhat related to OI in the media, are you familiar with the Mass Effect series? The main trilogy has Joker (voiced by Seth Green and lives up to his name) as your pilot, who has OI (although around the second game he can kinda limp around on his own because it's the future and he presumably received some sort of prosthetics so that it's not as bad). It's never really made a prominent thing, but it is interesting.

I have never heard of that, but will look into it. Thanks.

There's also a guy with OI in Amelie (French film).

Thats right, I forgot about that. Though they never actually mention OI.

Can you emphasize with the theory of the movie?

Check out the plot here: https://en.wikipedia.org/wiki/Unbreakable_(film)

That doesn't really answer his question.

Do you think there are people with "osteogenesis superperfecta" and they just don't know it?

Honestly I didn't understand his question. But if thats it... then... no... its a fictional movie.

What have you done or tried despite people telling you not to due to the dangers?

I haven't really had many people tell me not to do anything, more over folks telling me to do certain things. Like for example when I was in high school a lot of folks told me I should go into computer science because that was a job I could do in a wheelchair. So being stubborn I went and studied politics instead, and then ended up building a career in IT. If they would have just stayed quite and let me discover technology on my own, I probably would have gotten further in my career by now in IT. LOL

Hey, you never know, maybe you'll end up running for office later in life.

God I hope not.

"As someone who has broken 250 bones in my own body, i know how to break the mold of crony capitalism. Vote Joe Hall!"

I'd vote for him!

As a parent of a 4 year old, it is very likely that if he saw you out and about he would turn and ask me ‘what’s wrong with him’ or ‘why is he in that chair’. I usually just say that some people can’t walk and then later may talk to him in more detail. In the moment though I just attempt to minimize staring and loud question asking. What would your preference be in this situation?

I think that's a pretty good way to handle it. For some odd reason some parents think its smart to approach the person in a wheelchair and have a conversation with their child and the disabled person. Personally I hate that. People with disabilities are just as unpredictable as anyone else. You have no idea what could happen when talking to a stranger, especially one that may already feel marginalized. Also its not anyone else's responsibility to educate someone else's kid, unless they are a teacher ectra. You might want to look into some good educational materials about diversity that includes depictions of people in wheelchairs. This is a good start: https://www.amazon.com/Dont-Call-Me-Special-Disability/dp/0764121189/

Other than when you were born, how many bones have you broken at one time?

one time when I was a kid I flipped my chair off a sidewalk and broke both legs, my shoulder, my nose, and a tooth.

Are your teeth as prone to breaking as the rest of your bones? And if so, do you have to be on a specific diet to be sure there's nothing accidentally so hard it might crack a tooth?

Yes they are. I think that maybe I should be on a special diet considering as I get older I break more and more teeth. But I love food and don't want to stop eating what I want. LOL

Do you have a lot of cavities?

No, but a lot of broken teeth.

Do you expect to just end up with dentures one day? Also, do ordinary dentist techniques like drilling go wrong with OI?

yes, and yes.

Just set aside a dental implants fund.. haha. Food is the best, for sure. What's your favourite ?

Myself , i looove a proper Montreal style poutine.

Hot dogs, fried chicken, steak medium rare... you know all the health foods.

Do you count fingers and toes as breaks?

Type 1 here (the most mild form). I’ve broken about 30 times, but I break a few fingers and toes a year here. I don’t really count those and usually don’t even bother going to the dr.

I don't really count fractures at all to be honest. The 250 estimate is from what most say about type 3s and my age. I know a lot of type 1 folks count theirs, likely because there are less and its more feasible to track.

Do you have any funny/strange scenarios this has caused?

LOL of course... I mean I have a lifetime of 36 years to pull from I could probably write a book at this point.

What was the most painful bone to break?

Probably one of my lower leg bones... I am not sure though... Pain is relative at this point.

How bad is your "usual" fracture? Like a hairline or full-blown broken? Either way that's rough. Thanks for doing the AMA and good to see you seem to have a positive outlook on life.

A lot of them now a days are hairline.

Hi!! Do you have blue sclera?

I do!

What is that?

sclera

https://en.wikipedia.org/wiki/Sclera

WTF it's blue? like... blue-on-blue eyes? you're a fucking FREMEN?

The absence of collagen changes the pigmentation.

Do you have a higher pain threshold because of all your fractures? How do you cope?

I am not sure how others experience pain, so its hard to say.

Can you swim, or the resistance of the water is too much? Thank you for your sharing.

BTW for those who use metric system 3 ft is 91.44 cm

Yes! In fact swimming/water therapy is the most recommended form of exercise for folks with OI because it is low impact/resistance. I love to swim.

Can you stand in the pool or is that not a good idea?

Yes I can! And its a great idea!

Have you been scuba diving before? They do assisted dives as well (since you probably won't be able to carry all the gear).

No i have never done that.

Hi! My husband and I have a long time buddy with OI. One of the problems he's had is people often get touchy since he's a little guy in a wheelchair. Have you had the same problem? Have you had to disable your cars airbags? Also have you heard of Ivar the Boneless? He was a Viking leader who some think had OI.

They get touchy??? Like they touch him? In a sexual way? I'll need to know more before I can answer that question. LOL

Yes I disabled my mom's passenger side bag so I can ride with her.

And yes I have heard of Ivar the Boneless. One of our most well known warriors! :)

Not in a sexual way, more overly friendly. Kind of like people treat children.

That has happen before. I usually have some form of beard though, so not often anymore.

Staying on the sexual.. ever broke a bone jerking it?

Nope.

What is the dumbest reason you've had a break? Have you ever broke something and just thought, you've got to be kidding me?

One time my ex girlfriend let a stray cat into the apartment. It got in a fight with our cat. I went to block our cat with my chair so she could get the stray out and I wasn't watching where I was going and hit the fridge with out my seatbelt on and landed right between the cats. I broke up the cat fight and my hip at the same time.

Geez.

I have been answering so many questions all day long that I read you comment just now as "cheese"!! And now can't stop laughing.

What is the most important thing you do to keep yourself protected? For example the steps you take in your daily life to avoid potential impacts and pressure that might break/fracture your bones?

Also, does it take longer for your bones to heal than a 'normal' person?

Well I don't do the obvious things that are going to cause a fracture for one. Otherwise I don't think about it that much to be honest. I don't live in fear like others might. Though I am lucky in that my interests have always been aligned well with "safe" activities. When I was younger I always chose something with computers over sports or physical activities. I am a nerd at heart.

You seem like a very warm and happy person, thank you for sharing.

Have you had modifications done to your home? Padding, or anything like that?

no not really. LOL

What prevents you from walking? Is it impossible based on previous injuries? Or more of a precautionary measure because you would likely get injured?

The weight of my body would break my legs.

What kind of hobbies do you have?

I watch netflix, work on side web projects, and have recently starting growing vegetables on my patio here.

I’m going to follow you on Twitter, if that’s ok. Thanks for doing this AMA!

Of course its OK. Thanks for the follow!

Have you ever broken a bone and, knowing your condition, still surprised you broke it? Kind of like a frustrated disbelief?

No not really. LOL I am actually more surprised if I don't fracture. Like one time I fell out of my wheelchair and didn't get hurt. And that was surprising.

A bit personal of a question, but I'm genuinely curious how this condition has affected your love life. Any stories or tidbits you'd be willing to share?

As a person with a disability I face the same social stigmas and barriers to socialization that all folks with physical disabilities do. But I have been in a handful of relationships some more serious than others. The other day though I was thinking that for some odd reason that area of my life seems to be getting easier as I get older.

I'm told that as we get older we care less about what people think of us, so some things that make us more cautious or less confident when we're young (maybe like having a disability or whatever) get less of a problem as we age because we get used to who we are. Like a 'this is who I am, get over it' mentality.

You be you. And thanks for telling us about you.

Yeah that makes a lot of sense.

Are there any insights that you've gleaned from it? You know, like Mr. Glass did when he recognized that there must be someone who is "unbreakable"?

Yeah I am sure there are. I mean my disability has been such a huge factor in my life, that it has to have shaped a lot of the ways that I see things. But I am not really sure what they are. I have had OI my whole life. I don't know anything other than a life with OI. So its hard for me to identify how I might see things differently than you.... But I do know that no one is "unbreakable". LOL

http://www.dailymail.co.uk/health/article-3401566/The-bionic-girl-doesn-t-eat-rarely-sleeps-didn-t-feel-pain-dragged-street-car.html

She might be.

Interesting!

How tall are you? I think there was a family at my high school with this disease. They were all in the under 5 feet range

3ft 1inch

First - this is one of the best AMA's I've read in a while. You're doing a great job answering questions, and it's been very interesting to read.

You say that 'pain is relative' - obviously you can't know what it's like to not have OI and we can never know what it's like to have it.. but could you give us a bit more of an insight on what it feels like? Do you feel each break the same way, or have you gotten used to the pain over time? And how aware are you of the threshold at which point a bone will break - do you ever get surprised by it anymore? And are you frustrated at all by the condition (like, oh crap, there goes another bone..)?

I'd love to hear you talk more about 'pain is relative' - that's such an interesting concept, especially with such a disorder like OI.

And thank you again!

Tell me about the color blue. Define it for me without mentioning blue things. What is the color green? Can you tell me what the color green looks like without naming green things? You can't because everyone experiences the world in their own unique way. I have no idea what orange looks like to you, or how your pain feels. Its yours.

We can agree that a broken tibia is more painful than a paper cut. But how much more painful? 6 more inches painful? 4 more pounds painful? How do we measure pain?

For me the pain hasn't gotten better its just more defined. The pain in my back is older than most of my friendships. But I've only known the pain in my neck for about a year, and I am starting to tolerate it like an annoying neighbor. The pain that comes from an broken tibia though is a very old pain that I haven't felt in a long time. But if it comes back, it won't be as bad as the first time because I already know what to expect. That doesn't make it any less painful just more tolerable.

But like I said these are only my thoughts because its my pain I am talking about... and its the color orange.

Have you found your opposite?

I have high density bones. Seldom get sick.

Maybe I have now. Though maybe I should test you? LOL

Been there. I actually joke I'm the Dollar Store version of an Xman.

Honest question. Are your bones brittle on an equal level like across the board or does it vary from bone to bone?

Thicker bones that have naturally more dense are stronger.

How many trains have you derailed?

Not enough. (I kid, I kid) LOL

How do you feel knowing you have all those fractures? Sad? Mad? Kind of impressed?

Pretty normal. I have had OI my entire life. It's the only way I have known how to live. I might have felt differently if I were the only person that has OI. Or if I didn't know anyone else with OI. But I am a part of a great community of folks just like me and we all pretty much feel normal.

Have you read handle with care by Jodi Picoult? It's a book about a girl with OI type 3. (It's very sad). If so, Would you say that was a fairly apt description of your disorder?

Yes, my friend actually did the medical consult for that book.

Hi Joe! You know me. :-)

How much of a pain has it been over the years to get insurance to cover all the things that you need? I saw in another comment below that you have a pretty good insurance plan right now, but I'm sure that hasn't always been the case. Did you have to fight to get the right type of electric wheelchair, etc?

Its been difficult. The ACA has made the struggle a little bit easier by guaranteeing non-discrimination on the basis of pre-existing condition. However, standard coverage doesn't always cover what is needed. You asked about electric wheelchairs? Most insurance companies will get a new chair every 7 or 8 years. Which means you need to pick one that will last that long and one that they will cover. Many insurers won't cover anything outside the basic model, which in my opinion is why we haven't seen very much innovation in the power wheelchair industry over the last 15 years.

I always wanted to ask someone with this issue. What about your skull? And your brain inside your skull? Can your skull (gulp) fracture? Is your brain adequately protected? Do you wear a helmet?

Also, what about the vertebre around your neck. Are you in danger of having it break? Could it break and choke your airway?

I guess I just have so many questions. When you break a bone, does it hurt? Does it eventually heal?

I feel like I could go on asking questions. What about the little bones in your inner ear. Are there any chances of those breaking, and you going deaf?

Any vision problems due to the orbits around your eyes being brittle?

Do any of the broken bones shard and cause arteries and/or veins to sever?

Is this issue genetic? If it is, is it passed down through heredity?

Has your growth been stunted?

Have you ever woken up with a broken bone that you broke overnight while sleeping?

When you go out, do you have to have someone go with you to keep people from bumping in to you and injuring you?

I always wanted to ask someone with this issue. What about your skull? And your brain inside your skull? Can your skull (gulp) fracture? Is your brain adequately protected? Do you wear a helmet?

No helmet, but yes my skull is affected. I just try not to hit my head.

Also, what about the vertebre around your neck. Are you in danger of having it break? Could it break and choke your airway?

Yes all bones are affected. In regards to vertebrae this is the most common concern: https://en.wikipedia.org/wiki/Basilar_invagination

I guess I just have so many questions. When you break a bone, does it hurt? Does it eventually heal?

Yes it hurts. Yes it heals.

I feel like I could go on asking questions. What about the little bones in your inner ear. Are there any chances of those breaking, and you going deaf?

Yes, hearing loss is a predominate characteristic. I am partially deaf and use hearing aids.

Any vision problems due to the orbits around your eyes being brittle?

No vision problems, but pretty much all folks with OI have blue sclera instead of white.

Do any of the broken bones shard and cause arteries and/or veins to sever?

I have never heard of that.

Is this issue genetic? If it is, is it passed down through heredity?

Yes, however in my case it was genetic mutation which means I am the first in my family.

Has your growth been stunted?

Yes, I am 3ft tall.

Have you ever woken up with a broken bone that you broke overnight while sleeping?

No, but certainly sore from sleeping weird.

When you go out, do you have to have someone go with you to keep people from bumping in to you and injuring you?

Depends on where I am going.

What is your fave brand of hot dogs? And fave toppings?

Nathans All Beef. Mustard & NY Style Onion Sauce.

Are your teeth affected by this condition ?

Yes very much so.

Can we see a picture of you? I'm not trying to be offensive but I really have no idea what a 3 foot tall person looks like and especially a 3 foot tall person with OI. If not its totally understandable.

You've never seen a 3ft tall person? Check out the verification comment for the picture: https://www.reddit.com/r/IAmA/comments/90q6yx/i_am_the_real_mr_glass_i_have_brittle_bone/e2sf9fq/

Mr Glass don't got nothing on you. Doesn't he say in the trailer he's broken only 92 bones? Are you also a genius?

Intelligence is relative, but the more I hang out on reddit the more I feel like a genius. LOL

In your opinion What are some things that people without this condition take for granted in everyday life?

Living in a world/society that was designed around their needs.

Have you ever been a patient at a teaching hospital/clinic?

I’m curious if med students have annoyed you since OI is something you learn right away in school (first week for my school).

Eager med students can often be disrespectful because of that, so I apologize if that’s been your experience. A med student started a rumor that my SO had Marfans (he doesn’t) when he was hospitalized and it led to periodic parades of students coming in his room to gawk when he was trying to rest. It was infuriating.

Yes med students are annoying. LOL

Have you broken bones from laughing too hard?

yes, best way to fracture!

I don't really have any questions, I just wanted to say thank you for this AMA. My girlfriend has type 4 OI, and I'm gonna marry her someday. Reading your replies helped me understand her sense of humor, and what she's been through. Any recommendations for how to educate myself more? Thanks again.

If you haven't yet you should both join us at one of our events. We do regional events across the nation and one national event every 2 years. You can come and meet others and learn a TON. http://www.oif.org

I've heard of parents losing their kids for brittle bone disease because nobody can explain their injuries. Do you believe the condition is under-diagnosed?

Yes this happens a lot. Which is a big reason that I do awareness stuff like this. We need to talk more about OI so the general public can better identify it and decision makers at CPS and the courts will be less likely to take kids away for unfounded abuse allegations. We hear about this at OIF.org at least once a month. We need more education for earlier diagnosis and less social workers taking kids away.

Thanks for answering questions.

So i was wondering what has been the most incontinent bone for you to break? Has there been one that has made you go I dont want to break that again? Or is that something that you dont put much thought into?

incontinent bone

Not sure what that means.... but generally I don't put much thought into that. All breaks are pretty shitty. But the worse are the ones that require long periods of immobility to heal.

Thanks.

whoops I meant inconvenient not incontinent sorry (spell check menu betrayed me).

Which one had the worst combination of place, healing time and pain. Would tailbone rank high on that list?

Yeah a broken tail bone is quite literally a pain in the ass. Broken ribs are also really bad because it hurts to breath.

What has been your biggest inconvenience this has caused you?

Um well... I am disabled, so I face the same struggles that all disabled people do. Finding accessible places, access to employment was a challenge at one point, access to healthcare, and a lot of other things that any person with a disability might face.

Wow/omg! I'm really sorry your condition exists.

Is there anything ongoing that science can do to help eliminate your condition or at least make like life more comfortable for you?

Thanks, but there's no reason to say you are sorry. I love my life. Its the only life I've ever know.

A majority of the research that is currently going on focuses on the genetics of OI. There are several infusion type genetic treatment options that are administered the same way chemo is. Because of my age and type of OI I am not a candidate for most of these. But that's ok because I don't like needles that much.

Serious question. How you can live with this disease? I wouldn't be able to live with that😓

well... I have never known any other way to live.

Your bones might be crystal, but your spirit is fucking hardened steel... i admire you.

I know it's a weird question, but can you have sex...? How is your every day? Can you drive?

Yes I can have sex. But I don't with strangers from reddit. Sorry to disappoint. My every day is pretty good usually. No, I do not drive, but mostly by choice.

I see you mentioned in the description that most bones get broken before puberty, how many of those 250 bones have broken after it?

The 250 is just an estimate. I would imagine maybe 20% have occured after puberty.

Are your eyes blue?

The scelara are.

Highschooler here. A kid I know also has OI, and has become quite the spokesperson for the cause. One of the absolute nicest kids I know! Has such a great sense of humor and even got a couple of us the opportunity to play wheelchair basketball with him a couple times (he’s on a nationally ranked team). My questions are:

What is the hardest part about having the condition?

What steps can be taken to help someone with the condition live life to the fullest while being sufficiently safe?

What’s your favorite sport/hobby?

What is the hardest part about having the condition?

Honestly, I am not sure. I have never lived any other way, so for me having OI is pretty normal. I guess the hardest would be breaking bones? LOL

What steps can be taken to help someone with the condition live life to the fullest while being sufficiently safe?

The best thing you can do for your friend is to continue being a good friend. Include him in activities that he can be an equal participant in. You shouldn't need to worry to much though about keeping him safe. Hes been living his entire life with OI and likely knows how to keep himself safe on his own. Just continue to be a good buddy and support him like you would any of your other friends.

What’s your favorite sport/hobby?

I am not really into sports. But I like programming and other nerdy boring things. LOL

No questions really, just wanted to say thanks for the interesting and entertaining AMA. You are hilarious. Love your personality and outlook on stuff. Ooh thought of a question! You look familiar, have you done any acting or documentaries?

No, but folks with OI have similar facial features because of common bone structures. So its likely you saw someone with OI in something at one point.

Are you able to game or is that not possible?

LOL yes.

How long have you gone without breaking or fracturing a bone?

Most people with OI experience less fractures after puberty, because during puberty your bones are still developing. I have one or two hairline fractures a year, but its been about 8 or 9 years since my last complete fracture.

[deleted]

Sure.

• Heres a picture of me in my wheelchair on my verified twitter account under the same screen name.
• Here I am listed as a member of the board of directors on OIF.org
• Also mentioned in the post I did a similar AMA a few years ago here.

at what age did you reach your peak height? and does your disorder affect your development in any areas that arent to do with your bones such as puberty?

I guess around 15 or 16? OI at its core is a collagen disorder. Which means in some cases it can affect cardiovascular systems, skin, and anywhere else that collagen is found.

Hey Joe! What is your favorite thing to do, like if you had an entirely free day, how would you spend it?

Probably making something. Or hanging out with friends or family.

As a person with OI I am wondering with 1 sort of sci-fi question:

If you could change your legs and arms into a fully robotic ones, just as strong or stronger than regular bones would you do it?

In my case I have OI in legs and spine and if I could change my legs into those long and powerful prostetic ones I wouldnt hesistate. Just getting rid of the pain is worth it in my opinion. What do you think?

Edit: you would have same touch and other sensations as in normal limbs

If you have OI, you have it everywhere. Its genetic disorder. You might only have problems in your legs and spine now. But one day it could also affect your hearing, heart, lungs, and other bone areas.

As for your question: I might do that if I could go back to who I am now every now and then. I like my body now.

I am sure if you’re still answering questions but have your ever thought about doing motivational speaking to schools?

No. That not my thing.

Nutella or Peanut Butter? Why?

Cookie butter.

Hello, sir. In the "Glass" trailer from last night, a character mentioned that Elijah haf had around 90+ fractures thusfar in his life. What I'm wondering is: what's the highest number of fractures someone with OI has had, and how much care to you have to put into protecting your head/neck area and ribs?

I have no idea. We don't regularly sit around and brag about our fracture counts LOL.

I don't put a lot of care into it at all... I just don't do what I know will cause me to get hurt.

How are you even alive?

For anyone reading this, just a heads up, I am going to start ignoring dumb questions. They are starting to pile up and I'd rather focus on the ones that have put some thought into their questions. Thanks.

Peepee bone too? ._.

There are no bones in the penis... How old are you anyways? LOL