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I have had around 250 broken bones in my life due to a rare bone disorder called Osteogenesis Imperfecta. AMA
HI, my name is Joe Hall, and I have a rare brittle bone disorder called Osteogenesis Imperfecta (OI) which causes my bones to fracture easily, and be deformed.
OI is typically broken into 8 different types based on commonly found clinical features. I have one of the more severe called Type 3.
I estimate that I have had around 250 broken bones in my lifetime, though I don't really keep count. OI is caused by mutations to collagen molecules in the body. As such it can also effect other aspects of your body such as skin, teeth, hearing, and even your heart.
Most people that have OI experience the majority of their fractures before puberty when the body's bones are still developing.
My type of OI (Type 3) is considered severe/moderate which is why I have never walked and am around 3 feet tall. I also have low respiratory functions and I am partially deaf. I use an electric wheelchair to get around and hearing aids to hear.
I have always tried to live my life as fully as possible and attack each day like a very hungry honey badger!
This week is OI awareness week, which is why I wanted to come here and do this AMA!
You can learn more about OI by asking me questions in the comments, or from the Osteogenesis Imperfecta Foundation >> http://www.OIF.org/
Over the next couple of days I'll try my best to answer as many questions as I can.
--Verification info for mods and cynics--
I have done this same type of AMA before here:
https://www.reddit.com/r/AMA/comments/n64z8j/i_have_had_approximately_250_broken_bones_so_far/
and here:
https://www.reddit.com/r/IAmA/comments/90q6yx/i_am_the_real_mr_glass_i_have_brittle_bone/
and here: https://www.reddit.com/r/AMA/comments/4hhtzg/i_have_had_around_250_fractures_broken_bones_in/
Here is a depressing selfie of me on my formally verified twitter account w/the same username used for this post: https://twitter.com/joehall/status/1357106427660300299
joehall442 karma
That depends on who you ask, but I think most would say that my life isn't anywhere near that exciting. LOL
william-t-power56 karma
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.
joehall136 karma
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.
psyllogism469 karma
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?
joehall662 karma
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.
NanotechNinja405 karma
Do you enjoy that Futurama episode with the 80s guy who has boneitis?
joehall411 karma
I think i have only seen it once. But every time I do this AMA it gets mentioned a million times. LOL
azimov_the_wise21 karma
I assume you also get spongebob episode references? The one where they have to sell chocolate?
joehall16 karma
Same as above. Seen it once and every time I do this AMA it gets mentioned a million times.
jxj24263 karma
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.
joehall328 karma
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.
jxj2419 karma
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.
Weioo107 karma
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?
joehall555 karma
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?
Iamanediblefriend210 karma
What is the shingle stupidest 'I can't believe i broke a bone doing that' moment in your life?
joehall354 karma
Chasing a stray cat that got into the house and falling out of my wheelchair in the process.
Iamanediblefriend145 karma
Cat's are dicks. You just know it went bragging to other cats about owning the wheelchair dude.
joehall170 karma
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.
HeyDudeImChill14 karma
How do people live with the guilt when small accidents have big consequences like that?
joehall42 karma
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.
biophile118126 karma
I am a denture technician. How are your teeth affected by OI? Do you wear a prosthesis/ is that in your future?
joehall163 karma
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.
biophile11856 karma
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 :)
joehall57 karma
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
Porichthyes114 karma
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?
joehall100 karma
I think we need better dental and hearing care. So much is focused on the conditions and not enough on the residual impacts.
skatergirl69420103 karma
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
joehall96 karma
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.
Thisidfor81 karma
In another answer you mentioned you put models together. What kind/brand of kits do you like?
joehall122 karma
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.
slackpipe13 karma
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.
joehall15 karma
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.
TheRealOsciban76 karma
That’s a lot of broken bones. Babe you tried, like, taking it fucking easy bro? Jesus
joehall199 karma
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.
Caterpillar8956 karma
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?
joehall154 karma
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.
-entertainment720-17 karma
Why are they stronger now? Medicine, or is your body just adapting?
A-Grey-World37 karma
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.
joehall27 karma
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.
TheDeadlySquid55 karma
Do you have a mantra and/or activity that keeps you going through the tough times while healing from a particularly difficult break?
joehall128 karma
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.
lancelongstiff48 karma
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.
joehall95 karma
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.
alwaysmyfault48 karma
What has been the most painful break?
Do you ever have times where you can't even tell you've broken something?
joehall64 karma
Probably my lower leg. And yes I think I have had a handful of hairline fractures that I can't even remember what happened.
__Beef__Supreme__43 karma
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?
joehall62 karma
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.
Iamjune40 karma
Do you have a high pain tolerance or does this condition change pain receptors?
joehall160 karma
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.
Smarterthanthat37 karma
Do you need a caretaker to help with things like dressing, bathing, mobility, to help prevent more broken bones?
Nighteyes4416 karma
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.
joehall48 karma
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.
Bowser771731 karma
Can you have a sex like with this condition? It seems like the movement from sex would break bones , unless it was veeeeerrrry sloooooow
joehall99 karma
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.
marklein28 karma
So do they heal in a similar to "normal" time frame, or not?
What's your favorite Aqua Teen Hunger Force episode?
joehall58 karma
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.
joehall59 karma
Great question! Probably my face I haven't broken, and the most is one of my ribs.
ShinigamiLeaf24 karma
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?
joehall24 karma
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.
friday_scientist22 karma
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.
joehall30 karma
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.
Same-Broccoli182219 karma
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?
joehall63 karma
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.
davmoha14 karma
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.
joehall32 karma
No I don't. Maybe I should though. Maybe I could get that tattooed as well somewhere.
joehall83 karma
Its actually a large wish bone, which is the international symbol for OI. Because it is a bone that breaks but still has hope.
Interloper63311 karma
Hi Joe, what do you do for a living? Has OI impacted your life in any unexpected ways?
joehall37 karma
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.
joehall43 karma
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.
Poor_Carol9 karma
Have you read the Jodi Picoult book Handle With Care? If so what did you think?
joehall20 karma
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.
moveovahh8 karma
At what age were you diagnosed? And sorry if I missed this, but how is this condition diagnosed?
joehall28 karma
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 .
kalehound7 karma
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?
joehall36 karma
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
cdwols7 karma
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?
joehall7 karma
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.
itsmarvin5 karma
What are some regular activities that you do that you occasionally break a bone doing? How do you reduce the risk?
joehall17 karma
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.
pookiemuffin04105 karma
What tv shows do you like to watch? How is the weather where you live right now? Favorite food, drink and dessert? 🙂
joehall11 karma
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.
joehall1 karma
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.
Interloper6331 karma
This one might be too personal, but I'm curious. How does sex work for you and your partner?
joehall5 karma
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
Agitated-Ad-25371 karma
What’s your favorite videogame? And what videogame are you playing currently?
joehall3 karma
I don't really game that much, but I used to play Diablo II/III, Minecraft, and mess around on 2nd life.
Jackpancake1 karma
Why does your disorder sound like it would be a spell from Harry Potter?
evilkim-17 karma
How do you have 250 broken bones if Humans only have 206 bones. Do you have extra bones?
insaneintheblain714 karma
Are you a supervillain?
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