I have had around 250 broken bones in my life due to a rare bone disorder called Osteogenesis Imperfecta. AMA

Are you a supervillain?

That depends on who you ask, but I think most would say that my life isn't anywhere near that exciting. LOL

In all seriousness, do you think your condition has necessarily made you more intelligent than most? My thought is, similar to Mr Glass's concept, you work you mind much more than an average person and it works much better consequently.

Like how if a person can only ever used one tool, they'd end up really really good with using it since there's no other option.

I will admit that I think of myself as pretty intelligent. LOL However I know a lot of folks with OI that are actually pretty stupid. So I don't think on average OI has anything to do with intelligence. But you are certainly not the first one to make that claim though.

How is your relationship with /r/NeverBrokeABone ?

A bunch of chumps if you ask me. LOL

you disgust me. /s

Dad? I didn't know you had a reddit account!

Thank you for doing this! My nephew has a version of this condition. He's about to turn three and just started learning to use a wheelchair. What life advice would you give him? Also, how can I be the most awesome uncle in the world for him?

If you have other nieces and nephews my best advice is for you to treat him the same way that you treat the others. Of course he will not be able to do all of the activities that the others do, however if you pick activities that you can include him in as an equal participant he'll be able to feel included as well. My best advice is for him to do his best to think of himself as normal as possible and that starts with the way that people treat him. Good luck, you'll do fine.

Do you enjoy that Futurama episode with the 80s guy who has boneitis?

I think i have only seen it once. But every time I do this AMA it gets mentioned a million times. LOL

I assume you also get spongebob episode references? The one where they have to sell chocolate?

Same as above. Seen it once and every time I do this AMA it gets mentioned a million times.

A friend of a friend of mine had OI, and their sclera (the whites of their eyes) were blueish because they were slightly translucent. Is this common in OI? Does this affect you, and if so, are you more sensitive to bright light?

I am curious about this because I am a vision researcher and have worked with people who have differing degrees of a different condition (albinism) that can have this effect, so that the normal reaction to light, the pupil getting small, doesn't help as much because light will still pass through their irises and sometimes their sclera.

Yes I have blue sclera. It is the result of malformed collagen. Other collagen disorders have this same characteristic. I think I am like 20/30 nearsighted. But I have never really worn glasses, and haven't had any other issues. My grandmother used to say I had beautiful eyes though.

So you don’t have problems in bright light?

As an aside, I always have recommended wrap-around sunglasses for my research subjects with ocular albinism.

No I don't think so.

Huh. I have bluish sclera too...

You may have a mild type of a collagen disorder.

Does it hurt every time?

Yes.

Do you move like a sloth due to this condition? IE extra slow and careful movements?

How many times has a stranger bumped into you while not paying attention and caused a break?

No I don't move like a sloth due to this condition. I move like a sloth because I am middle age, lazy, and lost my zest for life.

Not sure, maybe once or twice?

What is the shingle stupidest 'I can't believe i broke a bone doing that' moment in your life?

Chasing a stray cat that got into the house and falling out of my wheelchair in the process.

Cat's are dicks. You just know it went bragging to other cats about owning the wheelchair dude.

Yeah I was pretty pissed off. My girlfriend at the time let it in the house to "play" with our cat, and that turned into a fight, and I went to intervene like a moron, and ended up with a broken hip.

How do people live with the guilt when small accidents have big consequences like that?

I don't know. But in this specific incident it was my fault. I should not have chased a cat across the kitchen without my safety belt on, or for that matter at all.

What seemingly "normal" activity do you avoid at all costs?

walking. LOL

I am a denture technician. How are your teeth affected by OI? Do you wear a prosthesis/ is that in your future?

Yes many folks with OI, including myself also have Dentinogenesis Imperfecta, which is when OI affects the teeth. I am likely looking into some sort of dentures next year.

Wishing you the best when you go through your denture journey! If some of your teeth are strong enough to support a partial denture that'd be awesome. You're likely looking at full dentures eventually, which are kind of a bitch to get used to talking and eating with. But with time/practice you can get used to it! I deal with lots of denture patients if you have any questions :)

Thanks! I already have a partial on the bottom now. Looking at the full set soon as the remaining teeth are on the verge of quitting. LOL

Hi Joe! I have type I (mild) OI and sometimes when I tell people they say they’ve heard of it from a Reddit AMA! So thanks for doing such an amazing job raising awareness. My question is, what kind of new treatments or technologies would you be most excited to see developed for people with OI?

I think we need better dental and hearing care. So much is focused on the conditions and not enough on the residual impacts.

im a neurologist and specialize in diagnosing neuropathies and am very curious to know your answer to these:

• do you have nerve damage that accompanies the broken bones? i imagine if youve broken bones >200 times, inevitably one of those times may end up causing nerve damage if the bone shifted to the wrong spot?

• do you / have u ever had to see a neurologist? do any neurological / peripheral neuropathy symptoms occur with this disorder as well? or is it just within the bones

I do not have any sustained nerve damage. I have had numbness and tingling. The doctors were concerned that it might be a symptom of basilar invasion, which is common for folks with my type of OI. But they did an MRI and didn't see any issues. But I have heard of folks with OI that have basilar invasion say they have some weird nerve stuff going on.

In another answer you mentioned you put models together. What kind/brand of kits do you like?

Mostly prop models from scifi movies and tv shows, and a few classic cars. I have built 3 light sabers, Rey's blaster, and The Mandalorian's Blaster.

Ever get into scratch building/kit bashing? It's my new favorite hobby and I can't miss an opportunity, however small, to bring it up.

My actual question is, did the rogue legacy trait OI offend you? Heirs with that trait only had 1 hp, so any hit killed them. They renamed it in a patch for being insensitive.

Yes I am starting to get into more kit bashing as most if the models I want to build don't come in kits anymore.

I never played the Rogue Legacy. So no it didn't offend me.

What is kitbashing? Well... time to go down a third reddit wormhole of the night...

Glad I found this one though. u/joehall keep on truckin' dude. You rock!

kitbashing

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

That’s a lot of broken bones. Babe you tried, like, taking it fucking easy bro? Jesus

LOL

I have an acquaintance with OI, she is a bad ass. Are you a bad ass?

Yes. Yes I am.

What did you think of Unbreakable?

I think they did a pretty good job with that movie. Samuel L Jackson's character had the least severe type so other than his height he did a good job with that role. I know a lot of folks in the OI community did not like that movie because Price was a villain. But in real life even people with disabilities have the ability to do evil things. Overall I thought it was a good film and brought a lot of good exposure to OI.

He had the LEAST severe type?? I know it's subjective but how much easier do your bones break compared to how they portrayed him?

Well in the movie he walks around with a cane right? I do not walk at all, I use a wheelchair 24/7. I have not had a fracture and at least five or 10 years. However when I was much more fragile I regularly fractured a rib just by coughing or sneezing.

Are your bones stronger now?

Yes, more than they used to be, but not as strong as yours likely are.

Why are they stronger now? Medicine, or is your body just adapting?

Your bones naturally get stronger during and after puberty.

It is kind of sad that it's such a prominent trope, so many villains have some kind of physical deformity or disability to other them.

Have you ever read Lois McMaster Bujold's Vorkosigan books? The condition the main character had seems to have been based somewhat on OI. It was nice to have a hero with a disability buck the trend, and I felt it was not at all pandering or patronising, just was.

I hadn't considered that, but I guess thats true. I haven't read that, I'll check it out though. thanks for the recommendation.

Do you have a mantra and/or activity that keeps you going through the tough times while healing from a particularly difficult break?

No not really. I am pretty used to healing from fractures. I was born with 22. So my whole life has been about this. I don't really think much of it to be honest. I mostly just to take it one day at a time.

Have you broken a bone while boning?

Not yet. LOL

What do you do for fun?

Also, do you take a lot of drugs?

I realise I might have come close to answering my own question there.

When I am not working, I watch a lot of TV LOL put models together and hang out with family.

And no, I have been sober now for almost 8 years.

What has been the most painful break?

Do you ever have times where you can't even tell you've broken something?

Probably my lower leg. And yes I think I have had a handful of hairline fractures that I can't even remember what happened.

Heyyy I just took care of an OI patient the other day (as an anesthetist). Anything you think anesthesia providers should know about caring for OI patients besides the standard textbook stuff?

For more severe OI types, like mine, COPD is common. So much so, when I was younger they canceled my surgery because they didn't think I'd come off the respirator. Granted that was in the 80s and I guess things are better now. My BIL is a CRNA and claims he could put me under with out a problem. Thankfully I haven't need that though.

how's SpongeBob ?

No, I haven't seen that episode.

Do you have a high pain tolerance or does this condition change pain receptors?

I get this question a lot and it's difficult to answer because pain is subjective. I do not know how anyone else experiences pain. I only know how I experience pain. My gut though is that people with OI do not have a higher pain tolerance per se, however they know what to expect and their ability to cope is greater because they have more practice. That is not to say the pain is not there or just as intense as anyone else, it's just easier to deal with.

Do you need a caretaker to help with things like dressing, bathing, mobility, to help prevent more broken bones?

Yes, but not as much help as I think most would assume.

Feel free not to answer if this is too personal...

How did you find, and how do you fund the caregiver? When my parents are too old to take care of me, I'll need to hire a caregiver, but I have no idea how that will work.

In America there are agencies in pretty much every town. They are expensive though. I own a small software consulting business, and a web hosting company. So my best advise is to make a lot of money, or none at all. Thats the only way you'll be able to make it work. If you don't make anything at all you can qualify for medicaid and that will pay for it.

If you were born 100 years ago, how fucked would you be?

I wouldn't be fucked at all. I'd be dead.

Can you have a sex like with this condition? It seems like the movement from sex would break bones , unless it was veeeeerrrry sloooooow

Yes I can. I have found its not that big a deal as long as you have strong communication and set boundaries. Which is important for all folks that are engaged in intimacy.

Follow up question - have you ever broken anything during sex?

No.

So do they heal in a similar to "normal" time frame, or not?

What's your favorite Aqua Teen Hunger Force episode?

Yes I believe they do. Some claim they take longer the older you get, but I haven't tested that yet.

The one were the hand banana "meets" Carl.

What bones have you not broken? What bone has broken the most?

Great question! Probably my face I haven't broken, and the most is one of my ribs.

Have you had skull and/or spine fractures?

I think I have had hairline fractures of both.

Hi there! I have EDS, another collagen disorder, and am currently waiting on genetic testing for the vascular subtype. My question is how have you found a comprehensive medical team? Collagen is in everything, and finding a whole team that knows collagen and MTCDs has been really difficult for me. So far I've got a cardiologist who knows about it, but feels like I'm too complex, so I'm waiting for Mayo. Have you had success in finding a comprehensive care team for all the neurological, GI, and rheumatology issues that collagen disorders come with?

Honestly I haven't had any neurological, GI, and rheumatology issues. To be completely honest I am not that big into going to the doctor. I only go when I need to. I don't have a "comprehensive medical team". In fact the othro that I used to go and see retired 4 years ago and I haven't found a replacement yet. A lot of folks with OI though do what you are, and cover all their bases, I've just never felt the need and don't want the hassle and extra expense.

Hey Joe, love to see you doing these AMAs! I remember having good times with you in and out of classes at college, so it's so cool to see you famous-ish and doing well.

Question to appease the question gods: would you say the amount of time you've gone without breaking a bone is more to do with changes in bone strength or have you just gotten better at avoiding the things that could cause it? I'm assuming a bit of both.

Yes I think it is a bit of both. I am a real bore now a days though and I think that keeps me safer than anything. Not very many accidents staying at home sipping tea. LOL

Now I am really curious who you are. LOL I have my suspicions. Will message you in a bit.

I have a question. There are tests that can prevent kids from being born with OI. Basically, the couple can have their doctors create a number of embryos in a lab and then test each one to make sure they’re OI negative before implantation. What are you feelings about that?

yes I am aware of those test. When I was younger i was against it. But now that I am older and can see how hard having even a "healthy" family is, I am not sure how I feel. I have never had kids before so its not something Iv'e ever had to seriously consider. But I think the bigger point that should be consider is the motivation behind each decision. its not for me to say how others should have a family, but I do think some make that decision for the wrong reasons.

Do you have some type of warning bracelet that says be gentle when doing CPR? I am sure ribs would be broken anyway but you would not want one to puncture your heart.

No I don't. Maybe I should though. Maybe I could get that tattooed as well somewhere.

Could getting a tattoo cause a fracture for you?

I hasn't yet. I have one on my arm and I plan on getting others.

That's awesome, what is the tattoo on your arm?

Its actually a large wish bone, which is the international symbol for OI. Because it is a bone that breaks but still has hope.

What's the worst / most painful break you've had?

Probably a lower leg bone.

Hi Joe, what do you do for a living? Has OI impacted your life in any unexpected ways?

I am an SEO Consultant and the founder of Cloud22.com and HallAnalysis.com - Most of my work is technical SEO though.

Unexpected ways? I don't think so. I was born with it. It is all I have ever known, so I am not sure what else to expect.

Do you have much interaction with other people with OI?

Yes I do. Some of my closest friends have OI, and I used to be on the board of directors of OIF.org which put me in daily contact with hundreds of us.

Can you have kids?

Yes, but prefer not. LOL

Is this something that could be passed on to a child?

Yes it is a genetic disability that is typically passed down from a parent. I am a rare case though in that I am what is known as a genetic mutation and am the first in my family to have it.

Have you read the Jodi Picoult book Handle With Care? If so what did you think?

I have not read it, but am aware of it. A friend of mine with OI consulted Picoult for the book and I have heard it is fairly accurate.

At what age were you diagnosed? And sorry if I missed this, but how is this condition diagnosed?

I was diagnosed at birth with 22 fractures. Most with my level of severity are diagnosed at birth, others less severe aren't diagnosed until they are much older after they start walking and breaking from falling down .

Wow that’s crazy! Don’t baby’s have “bendy” bones? Were the fractures all from the birthing process or did some occurr in utero?

I was born via C-section. I think some of the fractures occurred before birth. And there was indications in the x-rays that I had fractures that had already healed before birth as well. Also I have a twin sister that does not have OI so I assume there wasn't a whole lot of space in there. LOL

Pretty late to this but in case you're still around, do you know the character Joker from the Mass Effect series of games? He describes himself as having Vrolik syndrome, which after a quick google I think is the same thing as OI? If you know him what did you think of him?

Not much of a gamer, but have heard of that game before.

Are you aware of the Joker character from the Mass Effect games?

Not much of a gamer, but have heard of that game before.

Does having OI have any effect on your ability to make a living?

Hey Bill! I think you likely already know the answer to this. But no, not now. Maybe it did when I first started, but everything is remote now. So its not impacted it at all.

What are some regular activities that you do that you occasionally break a bone doing? How do you reduce the risk?

Well I don't break on a regular basis any more. I now know what not to do, and I don't do them. Thats the best risk mitigation tactic.

What tv shows do you like to watch? How is the weather where you live right now? Favorite food, drink and dessert? 🙂

All of the Star Wars shows.

The IT Crowd

Peep Show

Breaking Bad

Sopranos

Star Trek: Voyager

Doctor Who

Game of Thrones

Its night time right now, but it was sunny today. Drinks: Ice tea, coffee, diet coke.

Oh and thank you for the award!! Your'e the bees knees.

What's your view on translating OI as "Latin for shitty bones"?

I don't have a view on that.

Are you happy?

Generally speaking? yes. At the moment I am kind of tired though.

Is there any bones you haven’t broken?

Probably some in my feet.

What’s your favorite videogame? And what videogame are you playing currently?

I don't really game that much, but I used to play Diablo II/III, Minecraft, and mess around on 2nd life.

Have you ever performed in theater?

no, but I took an acting class in college and loved it.

This one might be too personal, but I'm curious. How does sex work for you and your partner?

its not too personal, but also I have already answered that several times on this AMA and in past AMAs and I'd like to not talk to much more about it, as I don't want to accidentally seduce anyone. LOL

Hii Joe,

What kind of treatment (if any) are you currently receiving?

I am not receiving anything. There are a handful of infusion type meds on the market that help strengthen bones, but tend to only work for kids.

Where did you used to spend that Christmas cash?

huh?

Why does your disorder sound like it would be a spell from Harry Potter?

I think they are probably both Latin.

How do you have 250 broken bones if Humans only have 206 bones. Do you have extra bones?

Many of the bones I have broken I have broken many times.