Hi there! I have osteogenesis imperfecta type I, while I've mainly broken my legs I've also had an arm and a shoulder fracture. I go to university, have friends, and I basically try to be as normal of a person as I can be even though the disease impacts almost every part of my daily life -the symptoms are not just brittle bones, there's also getting tired faster, potential vision and hearing loss, etc. I use a wheelchair all the time except when sleeping or when I'm in a different chair. Ask me anything!

My proof picture has my eyes because blue sclera are a very common symptom of OI.

Proof: http://imgur.com/a/ejLt0

Edit: RIGHT. That was lovely, everyone. I feel like all good questions have been asked and answered and you now know literally everything about me! Thanks so much for your time and questions! If you ever have any other questions or just want to talk, send me a message :)

Comments: 1309 • Responses: 86  • Date: 

SmartestIdiotAlive3305 karma

Have you heard about that dude with glass bones and paper skin? Every morning he breaks his legs, every afternoon he breaks his arms. He lies awake in agony until his heart attacks put him to sleep.

coolbrittlebonegirl3680 karma


MjrMjr949 karma

How much can you squat?

coolbrittlebonegirl3463 karma

-70 kg

SpeaksToWeasels730 karma

The disease osteogenesis imperfecta sounds like a Harry Potter curse. So who is your favorite wizard?

coolbrittlebonegirl781 karma

Ohhh I love that, it does! I've been to the Harry Potter experience thing in London and that was absolutely amazing! I think one of my favourites has to be Sirius Black. I even have his replica wand.

Ch33sys0cks695 karma

Do you ever get used to breaking bones? Is it like "Agh that hurts" and can't move, or is it like "Aww shucks, broke another one"

coolbrittlebonegirl1007 karma

To be painfully honest, it's been five years since I last broke something and I don't have loads of memories of breaking things. Mostly because I was young but partly because I sort of deal with the memories by repressing them.

I've spent five minutes trying to write up whether breaking bones still hurts but I just don't know. Come back to me when I break something again!

Edit: I do have an example for when I broke three things at once, but with that it's kind of obvious that it'd hurt. That shit was like the worst pain in my life. I was lying on the pavement with two broken legs and a broken shoulder and the ambulence guys were around me and I was just yelling for them to give me a painkiller. Every once in a while I'd accidentally move a little bit and scream my heart out because of the pain, and then the ambulance guy said: 'I didn't do anything!' and I was like YES SURE BUT I'VE BROKEN THREE BONES OBVIOUSLY JUST LAYING HERE IS GOING TO HURT but I don't remember anything after that, I think they did put me down or at least give me enough pain killers for me to go out. Thanks ambulance guys.

B34RD326 karma

I'm glad for you. Having broken my leg once, I came to the comments to say how incredibly sorry I am that you've had to go through this. Hope you keep your break-free streak going for years to come!

coolbrittlebonegirl211 karma

Thank you, that's very nice!

ender8949 karma

I get that, I've had Lyme disease like 3 times, but it's been 15 years since the last time so I mostly remember it as having to take pills and use spf-50 even though I know it was way worse than I remember. When people get lyme I tell them to stop whinging about it because in my mind it wasn't a big deal even though I went through some crazy side-effects like bells palsy (facial paralysis. When I got that my doctor asked if I could still close my eyes, to which I said "yes, why?". He then casually launched into an explanation that I might not be able to physically close my eyes and that my eyeball could dry out, so I would need to get some goop to put on my eyeball at night).

coolbrittlebonegirl59 karma

Wow that's crazy, sorry you had to go through that! I hope your eyeball is doing good & moist right now!

I do recognize that thing that doctors do where they tell you about potential side effects like it's nothing, because they're so used to it. I was once literally lying on an operation table about to be put down for a shoulder surgery when the doctor casually told me that I might not be able to lift my arm above my head anymore. I was like wAIT WHA-

Darkchyylde499 karma

How do you have/plan to have sex? Are there any precautions and/or positions you have to take or avoid to minimize risk?

coolbrittlebonegirl605 karma

Like any other person. For me in my current state to break something it would take quite a weird fall. I've broken things when just walking or standing before, but then there was already something wrong in the bone that could've been found out before. My legs are fine at the moment!

MutantCreature322 karma

this is one of the few AMAs where I'm actually interested in the obligatory "well what about sex?" question since it actually seems like an easy way to break ribs/pelvis/etc

coolbrittlebonegirl490 karma

Haha yeah it's a question that pops up in a lot of people's minds when they hear about it but I'm afraid you're at the wrong address - there's not much risk involved for me. There's other people that have way worse versions of my disease, that have broken more than 200 bones and can break something just when bumping into a table!

drummyfish337 karma

Can you swim?

coolbrittlebonegirl789 karma

Yes! Swimming is actually great because it gives so much freedom. I can actually 'walk' underwater which feels amazing.

drummyfish152 karma

Do you have a pool at house? It seems like a good idea to have one so that you could experience this freedom anytime you want. I also think it would be good for excercising your muscles, right?

coolbrittlebonegirl294 karma

I wish! It's very uncommon in my country however. In all my life I've only ever known one person with a pool in their house and they lived in the countryside, which I don't. I might get one if I ever get incredibly rich! And yes, it's definitely good for exercising and I used to do it twice a week.

drummyfish147 karma

It's a shame because you're someone who could really use it. I wish you can have one in the future.

BTW reddit, maybe we should get our money together and buy OP a pool :)

coolbrittlebonegirl114 karma

I'm all for it! Nah, thanks for being so lovely but I live in a student complex so I think I'm good with going to the pool twice a week!

Kyle70040 karma

Can you not walk on ground? Your description seemed like you were in a wheelchair as a precaution, can you walk normally in certain situations?

That's really interesting

coolbrittlebonegirl60 karma

Not really. I mentioned somewhere else that I'm in a wheelchair both as a precaution and because my muscles are just too weak, but this AMA is huge so I get that you didn't see that. I can walk with crutches and I can walk if I hold something like a table or a person, but without any help I would probably make it a meter before just having to sit down on the ground. I can only shuffle my legs without help, not completely lift them.

SCRuler308 karma

Hi, I dont mean to be a weirdo but you have pretty eyes. So, have you been told what minimum amount of force is necessary to break your bones? Do you have any protective measures? And has anyone ever compared you to Joker from Mass Effect? He's a pretty integral character who also has brittle bones but he's apparently the best pilot ever.

coolbrittlebonegirl287 karma

Thanks! I like them too, some people say they look hazy, cloudy or dark (usually when talking to someone they don't immediately realize what's 'wrong' with my eyes, they just think they look weird) so compliments are always welcome.

I have no idea about the force thing and I suppose my entire life is one protective measure, I have to be extremely cautious at all times. For example, if there's people near me and one of them pushes another, even if it's just a joke, I will immediately back up to lessen the chances of someone falling on me, it has become a reflex. Being in a wheelchair also causes me to have to put less pressure on my bones, thus causing there to be less moments when they could break.

No one ever has! I just did some googling and it seems really cool that he is in such a massive franchise. I'm also very interested in those medicines from the future that he's taking!

KvsperLv61 karma

"Minimum amount of force to break your bones"... this sounds extremely sinister. Jk I'd be interested to know this too, since I think you need about 20-24 thousand N to break a human bone.

coolbrittlebonegirl104 karma

You'd be surprised how many people actually ask about this. I don't want to generalize but in secondary school it was always the boys asking how hard they'd have to hit me for me to break something!

KvsperLv45 karma

That has an semi-sadistic tone to it. Have you ever broke / fractured any bone because of someones doings?

coolbrittlebonegirl114 karma

Sort of. You know how in gym class your teacher always tells you to 'focus on the ball!' ? Back in primary school when I was able to walk for a while, we were doing a ball sport and because we were both focusing on the ball, I collided with someone else. We both fell, I broke my arm, he was fine.

Another time I was in a chair and someone pushed it forward a little bit, and sort of pushed my legs into a cabinet that caused one of them to break. I don't really remember it too well. I think that's all times it had to do with someone else, but I remember less than half of my fractures.

KvsperLv37 karma

That is pretty extreme in a way. On a side note, or if you want to share, do you know what kind of effects will / could having children have on you?

coolbrittlebonegirl117 karma

Good question! I don't really know, like I mentioned somewhere else, a doctor once told me that my hearing loss could get worse if I were to get pregnant. Lots of people with OI also have to have c-sections to minimize risk of fractures.

You didn't specifically ask but there's also the moral dilemma of having children when you have a genetic disease, as I think there's a 50/50 chance of my kids having it. If you want to know my thoughts on that, let me know!

KamiOfOldStone31 karma

I do. It seems very taxing to not only have to think about your day to day so seriously, but also have parts of your future be troublesome.

coolbrittlebonegirl72 karma

Honestly I don't really have to think about my day to day so seriously. It comes naturally because I've been doing it all my life.

I'm very squeamish when it comes to broken bones, I can't handle people talking about it at all, so I think I would be the worst parent ever to a child with brittle bones. If they'd break something I'd just run away screaming. It obviously also depends on the person I'd be having children with. The technology is developing with things like embryo selection too but that's a huge moral dilemma too. Basically, I don't know!

thirdtime88-3 karma

he pupils are dilated which im assuming is from what ever medications they have her on

coolbrittlebonegirl1 karma

my pupils are dilated because I was shining a huge light in my face :)

VentingSalmon3 karma

my pupils are dilated because I was shining a huge light in my face :)

That's not how the Pupillary light reflex works. It's the complete opposite really, a big ass light should have your eyes pinned.

So, /u/thirdtime88 is probably correct.

coolbrittlebonegirl3 karma

Oh, you're right about that that's not how it works. My bad, I got the words mixed up. I don't think my pupils are extremely dilated though and I'm not on any crazy meds.

nuhsing246 karma

Have you seen Unbreakable?

coolbrittlebonegirl282 karma

I haven't. It's one of the main questions people ask when learning about my disease though, and I'd love to watch it because I think the guy with OI is like a supervillain right?

Kinda offtopic: I was once in camden market in London where a guy in a leopard onesie tried give me the dvd version of Unbreakable after I'd told him like five times that I don't have a dvd player. He insisted!

Ssutuanjoe218 karma

Resident doctor here.

I just found it super fascinating to actually see the blue sclera of your eyes. We often read about it in textbooks, but rarely get to see what it actually looks like. Thanks for the pic! :)

(In accordance with the rule about asking a question) Do people comment on the sclera? When you meet new physicians, can they point it out right away, or do you usually tell them about your OI first?

coolbrittlebonegirl159 karma

Cool! And yeah for me it's the most normal thing in the world, being constantly surrounded by family members that also have it.

People do comment on it, and the funny thing is they mostly can't immediately pinpoint what's weird about my eyes, as it's so uncommon. I think it's only happened once that someone could tell what was different about them without me telling!

from_the_shadowz20 karma

medical student here,

I hope not to come off as superficial, but it was the first thing i looked for in your picture. It's captivating to see this in a documented case. If you don't mind me asking how prevalent is this in your family?

coolbrittlebonegirl39 karma

my dad's side of the family is fine, and on my mom's side my granddad has it, 3/4 of his children (all the females) have it. My mum has two kids that have it, her sister also has two kids that have it.

Cd5ssmffan198 karma

Do you like Mass Effect?

coolbrittlebonegirl17 karma

I replied to a few other variations of this question, don't know why this one is so high up!

tokeaphatty140 karma

What's your favorite thing to draw on your casts?

coolbrittlebonegirl369 karma

All most of my fractures happened when I was in primary/secondary school, I would usually just get the entire class to sign them so I looked popular. I was a regular in the 'cast room' in the hospital though, so they allowed me to choose exclusive colours or do combinations of two colours which was pretty cool.

onyxthekitty46 karma

I got teddy bear cast wrapping when I was five for a broken leg! I remember when they sawed off the cast it felt super weird.

coolbrittlebonegirl111 karma

Oh man, in my country, when kids are in the ambulance, they get a teddy bear as sort of consolation. I have so goddamn many teddy bears. I literally have all the varieties, it was like 'collect all 24!'

TheParabolicMan95 karma

Do you use a wheelchair because you're healing? Or has it gotten to a point where you can't walk without a high chance of fracturing something?

coolbrittlebonegirl145 karma

A mixture of both. The last time I broke something was five years ago but it was three things at once so it definitely was a longer recovery process than usual. My muscles are both too weak to support my body weight and it's also definitely safer to be in a wheelchair as the chances of falling are way lower.

vancity_7762 karma

When mowing your yard can you cut more than 1/4 inch of the blade of grass at a time without damaging the integrity of your lawn?

coolbrittlebonegirl42 karma

I don't have a lawn :( lots of houseplants though

stininja62 karma

What potential side affect (such as hearing/vision loss) do you worry about the most?

coolbrittlebonegirl159 karma

For me personally it's hearing loss. If I'm correct, the side effects show themselves pretty early in life, so chances of me also developing vision loss are pretty low. I think I remember a doctor saying at some point that the hearing loss can get worse after a pregnancy 'but that the miracle of life compensates for it'. It was weird.

The effects are completely different depending on the person; almost everyone in one side of my family also has type I OI, and we all have a mixture of the symptoms. I'm the only person in a wheelchair, but I have perfect vision and slight hearing loss. Another family member has had 3 fractures when they were a toddler, but they need to wear hearing aids and glasses.

stininja296 karma

Just have safe sex and you won't get hearing aids.

coolbrittlebonegirl166 karma

I had to google what you meant with this. I feel bad.

Fenastus30 karma

Can your condition be passed on to your children if you were to have any?

coolbrittlebonegirl47 karma

There's a 50/50 chance I think.

Fenastus21 karma

Is that a risk that you'd be willing to take one day, or is that something you haven't decided on?

Not to be one of those people that are like "Ohhhh you should definitely have kids regardless!", because that's bullshit and you should do what you would like to.

coolbrittlebonegirl27 karma

I'm gonna copypaste something I just wrote on another comment:

For me, personally, it would feel a little selfish to put a child on the earth with a disease just because I want it to be my child when there's so many kids out there that already are here and have lost their parents.

It's not like I would've never wanted myself to be born, it's just that if I could've been born without the disease, that would've made my life better.

orde21614 karma

Must be quite a big decision if you suffer terribly from something and know that to have a kid would mean you could well be passing the suffering on to another generation.

Considering one whole side of your family has your condition, has the subject ever cropped up between you and your parents?

coolbrittlebonegirl109 karma

Not everyone has it, it occurs mostly in females, even though some females also don't have it. It's a lottery! I have talked about it with my mum, and she finds it kind of difficult. She's only broken about five things in her life and it has never majorly impacted her, so she didn't really think twice before having kids - she'd never imagined it being so bad with me. I've never blamed her for it even though I personally don't think I'd ever put children on earth with my condition. There's already an overpopulation problem, there's loads of kids out there that need parents, how selfish would I be to be like 'well, I want it to be MY kid'? It's different for everyone of course and I'm completely fine with people in my family having kids, it's just that, with my current mindset, I would never.

baronmad-2 karma

If you decide to have a child you will understand what the doctor meant by "but the miracle of life compensates for it" children are... very very special in all the most important ways. There is nothing like a child to bring joy into your life, nothing like a child when it comes to wash away all problems and worries. You cant compare having a child to any thing else really.

You might think you have loved before, but if you have a child that day you will think that you never really knew what love was.

In a sense trying to describe what its like to have a child to someone that doesnt have one, is a bit like trying to describe colors to a blind person, sound to a deaf person. The words we have arent enough.

So i suggest you consider and explore your own emotions around it.

coolbrittlebonegirl2 karma

Aw. This is actually such a lovely message, I'm happy you feel that way. I've definitely spent time exploring my thoughts about it, but I'm 21, don't have a relationship and am nowhere close to a point in life that I can even consider having children. At this moment in time, I think in my future I'd be much happier having seventeen cats than children!

jbthethird61 karma

Thank you for sharing your story. I'm a 35 year old with OI. Was diagnosed as Type I, but I believe it may actually be Type IV. Either way I'm fortunate to not be in a wheelchair, but I have dealt with 19 significant fractures throughout my life. You name it. I've probably broken it.

My first question for you is if you believe OI has made you a more compassionate or sensitive person? Do you believe it's made you a better person or friend? I definitely believe it's had that effect on me.

And what is your passion? What's your goal for your future?

I was fortunate to be a successful competitive junior and amateur golfer until having to give up the game four years ago. Still trying to figure out what passion or hobby to replace golf with.

Because of the rarity of the disease it has been impossible to find doctors who have any sense of how to deal with someone like me in terms of long term care. I experience significant joint pain day in and day out. I fear the onset of hearing problems. Fear not being as mobile one day.

Glad to hear you're still very upbeat and have a group of understanding family to lean on because they live with it, too. Thanks again for sharing!

coolbrittlebonegirl36 karma

I'm sorry to hear that! What exactly is the difference between I and IV? They're almost the same right? Do you not have any family that has it too?

I don't really know whether it's made me a more compassionate person. I've had it all my life, so it's kind of just made me the way I am, whatever that is.

My passion is English literature, I absolutely love it! I don't really have a tangible goal for the future as I feel like I can be happy in loads of settings. I think I would like to be either a uni lecturer or work in something like a museum. I would also like to expand on the current volunteering work I do at my local shelter, would love to become a foster. I hope you find something for yourself again! Just try out loads of new things I would think.

Is there not a specialist centre in the USA or is it too far away from where you live? And yeah, it's different for anyone. My mum is absolutely terrified of becoming older and losing more bodily functions, while I'm already way worse than her when it comes to things I can do, and I'm fine with it. I'm generally just very happy that things like wheelchairs exist, that I can get assistance with using public transport etc. Thanks for your kindness!

nebunic33 karma

What was your most unpleasant break to date?

coolbrittlebonegirl99 karma

I once did a thing that caused me to lose one and a half tooth, break and dislocate my right shoulder, break my left upper leg and shatter my right knee all at the same time. That was pretty bad. It's five years ago and I still have fake front teeth and discomfort in those places often.

Jebbediahh23 karma

Are your teeth also affected by the disorder?

coolbrittlebonegirl19 karma

I think my dentist does need to know about the disease because it affects them in some way, but I'm not entirely sure how. Google will probably know.

fetsnage32 karma

Have you ever eaten rhubarb cake? If not, try it. it is good.

coolbrittlebonegirl42 karma

I've only ever seen rhubarb in canned form and it looks like puke. Thanks for the recommendation though.

xbk126 karma

Do you do any special therapy or physical training?

coolbrittlebonegirl53 karma

I've had physical therapy all my life. All my fractures have occured from age 1 to age 16, so I used to break something once or twice a year. I would break a leg, get surgery, have the cast on, get it removed, have physical therapy, sort of recover and then I would break something again.

For the last couple of years I've mainly just gone to the gym and worked out to try and keep my muscle strength up. It's way easier to be lazy and accept the situation as it is than to go to therapy again and try to walk - I have an appointment set up with some specialist doctors though that are going to do a full checkup and see whether it would be a good idea for me to try and walk again or whether there's too much risk. Sorry for rambling!

Com_BEPFA16 karma

What do you do at the gym? Any special exercises/executions to reduce the risk of injury?

Good luck with the checkup and walking again, sounds like a pain having to sit all the time while trying not to lose functionality (not trying to be a downer, sorry if it sounds like it).

On a completely unrelated sidenote, do you watch The Middle (yeah, I'm asking because of Atticus Shaffer. Is there any interest in specifically seeing things about OI if you have it?)?

coolbrittlebonegirl22 karma

No it's mainly just trying to keep my muscle strength up, so just using the machines (leg press, etc) and cycling (both the one for your legs and for your arms).

Thanks! Honestly I have absolutely no idea what it is like to stand up all the time. Sounds like a pain!

I had no idea he had OI! I don't watch the show and I'm not really interested in specifically seeing OI related things. Everyone handles having a chronic disease differently, like I went to a 'normal' school and don't actively seek out other people with OI. It's cool to talk to some every once in a while but I generally find it tiring to spend a lot of time focusing on it. There's an OI union in my country but my family only used to go to the gatherings if it included like a free day at the zoo hahah!

Com_BEPFA7 karma

I was just asking because you explained that you once broke a leg while standing, so I was wondering if there is any special precaution you take with those metal death machines.

It is! Which is why I'm lazily lying in bed most of the time. ;)

Figured as much. It's not like you become some kind of drone once you have some chronic disease and everybody follows the hive mind. I just genuinely wondered because when I read about his disease (he does walk in an unusual way, so I took to Google, found out he was a lot older than his character in the series and then that he actually has some sort of "glass bone" disease, having everybody on set take extra care not to hurt him. Which is noticeable, by the way, once you know that. Every scene where there is something hectic going on, at least in the first few seasons, he simply disappears and reappears later. Or it's an obvious double) I, being myself, immediately became kind of curious to see if he was the only one with this condition (which has its very light forms so not necessarily as noticeable) known to the public. So maybe growing up with it there'd be some interest in that.

I do get your point. You live with it all the time, why spend private time on doing related things? Better to just live life to the fullest regardless. Most people with any sort of disability more or less despise being reminded of it and would love to just be treated like anybody else.

Sounds like what I'd do honestly. Free shit? Sign me up! Metting other "me"s? Yeah, you know, I'm kinda busy being breakable right now...maybe next time!

Thanks for the answer!

coolbrittlebonegirl13 karma

Well, when I broke a leg while standing there was something already wrong that was undiscovered. So unless the small chance occurs that that happens again, I should be good. I always consult a physical therapist before a new training plan as well.

Yeah I read that he plays a character that's way younger, it's because most people that have OI are really short. I'm 5''2 so it's not as bad! I think it's really cool that you noticed all that and did some research on it!

And yeah thanks for understanding! I actually find that people have different ways of dealing. I once saw a girl on social media whose entire profile was about her disease and all her posts were about it. It works for some people but it kind of saddened me as to me that seems like a terrible way to live.

Thanks for your kindness!

switchondem25 karma

I did once know someone with brittle bones, but I never knew about the blue sclera thing. Do you know what it is that causes that? Also, are there any treatments / therapies you do to help it, or is it just a matter of coping?

coolbrittlebonegirl51 karma

The sclera thing has to do with low collagen. Wikipedia knows it better than I do. There is no cure but I take a weekly pill to help with bone density, I also have metal rods in a lot of the bones in my legs which causes me to not be ably to pass a metal detector test!

There's loads of options for therapy, I personally have had physical therapy all my life and when I was younger I had creative therapy to help me overcome my fear of casts being cut off when a fracture is healed. (it's a scary process okay, a guy in a mask takes a miniature buzzing saw and uses it less than an inch away from your leg)

switchondem10 karma

Ahh I will look that up, I'm finding the blue eyes strangely fascinating! Regarding the metal rods, were they a result of breaking your legs or a kind of preventative measure?

coolbrittlebonegirl24 karma

Yeah I love them, they're so unique! It's really strange for me to talk to someone else with blue scleras because it occurs almost never in everyday life. The metal rods are a result of breaking something, it takes quite a surgery to insert them so I don't think it'd be done as a precautionary measure.

herbw22 karma

Hmm. Considering that in long space flight, the inability to prevent bone and calcium loss can be a major problem,often resulting in pathological fractures upon return to earth.

Wouldn't a good series of treatments for Osteogenesis imperfecta have a major bearing on handling bone loss in space?

Might be worth looking into for NASA funding, too.

coolbrittlebonegirl56 karma

Nice thought! I don't think there's too much research on OI and I'm actually kind of fine with that. There's other things out there that affect people's quality of life way more that I think should be prioritized.

XanaxManic14 karma

This comment is particularly inspiring to me. Thanks.

coolbrittlebonegirl15 karma

Thanks friends!

laughingseal16 karma

What exactly am I looking at re your eyes?

Edit: That sounds cheeky, I'm not trying to be I just don't see anything wrong with your eyes at all!

coolbrittlebonegirl23 karma

'The white of the eye' or sclera in my eye is not clear white, it's sort of a blue-greyish colour.

tcrpgfan13 karma

If you could land a punch on anyone, who would it be and why?

coolbrittlebonegirl145 karma

Cliché as it is, Donald Trump. I just absolutely despise that man, everything he does and stands for and I think it'd be the most satisfying feeling in the world. Then again, I can't hit very hard.

tcrpgfan29 karma

I would probably hit the current head of the Church of Scientology. They are group of sketchy people who do horrid things to people who criticize them like unwarranted and unlawful imprisonment, stalking, torture, and brainwashing. My arm would be sore and my hand would be all bruised up to hell (light muscular dystrophy), but it would be so worth it.

coolbrittlebonegirl45 karma

Ooooo David Miscavige! I watched Going Clear a while ago, can you tell. The things that guy is accused of are absolutely terrible. Did you know that his wife is missing? The police said that she had come to the station to confirm that she's alive but she hasn't been seen in public for like more than nine years. It's crazy.

mrshernandez0913 karma

Why are blue slceras common with your disease?

coolbrittlebonegirl19 karma

It has to do, like everything in the disease, with inefficient collagen. Wikipedia tells me this: The blue-gray color of the sclera is due to the underlying choroidal veins which show through. This is due to the sclera being thinner than normal because the defective Type I collagen is not forming correctly.

Malxius12 karma

Do you still feel bad about your condition or do you just not care? What about your family, what do they think of your condition?

coolbrittlebonegirl33 karma

Difficult question. I mostly tend to not care. In my daily life, I hugely just forget about my wheelchair entirely. It's such an essential part of my life that it'd be weird to not have it.

I would obviously prefer just to be able to walk up steps, get into a bus or train, get through a small door, be able to cycle, but I'm also very happy with the fact that I can get assistance to use public transport on my own for example.

It's a genetic disease so almost everyone in my family also has it, although in a much milder form. No one else is in a wheelchair. They obviously feel bad for me, but again, it's such an integral part of my life that we don't really ever talk about it.

harry505012 karma

if u had a character in a down and dirty mortal kombat-style fighting game, what fighting moves would you have?

coolbrittlebonegirl28 karma

I would probably love everything to be catrelated, so like my ultimate would be me unleashing a see of cats and drowning my enemy in it.

eyesearskneesandtoes11 karma

What is one of your favourite foods ? a food that makes you lookforward to eating it hours away.

coolbrittlebonegirl19 karma

CHEESE PIZZA!! And for you?

DrizzledDrizzt11 karma

Don't really know how to properly phrase my question...What kind of pressure does it take for you to break a bone? Like, what kind of contact is required. What's the gentlest contact you've had that caused a bone break? Sorry if those sound weird.

coolbrittlebonegirl38 karma

It doesn't necessarily have to be contact. Most of my fractures have been me falling. The 'gentlest contact' I've had that caused a bone break was just standing. I was standing and then just broke my left leg, which caused me to put too much pressure on my right leg and have a small tear in that as well. I had one and a half cast on for a few weeks, that was pretty bad.

Wrydryn7 karma

With your disease do you have to follow a particular diet since I assume you process calcium differently?

coolbrittlebonegirl12 karma

I don't think so. I presume if a different diet would alleviate my symptoms, my doctors would tell me! It mostly has to do with collagen I think, not calcium.

traumadragon6 karma

How is your pain from breaking the bones you have? I broke my back, tailbone and pelvis 6 1/2 years ago and I am just constantly in pain! I was in a wheelchair for a short time until I relearned how to walk. So I can walk still, but I'm always hurting. Do you suffer from a lot of pain from the hardware you have and the bones you have broken? What do you do to reduce the pain?

coolbrittlebonegirl9 karma

I'm so sorry for what happened to you! I'm not in constant pain, but the fractures do sort of come back to haunt me. I have loads of complications of them and every once in a while one of them will start hurting again, but it's nothing that can't be fixed, it's mostly discomfort.

sleepytimegirl6 karma

How do get your eye makeup like that?

coolbrittlebonegirl7 karma

Years of practice!

Phlox_carolina5 karma

Do you feel your condition is too much the focus of attention with peers? Would you rather people forgot it more often, or would you rather more people asked you about it?

coolbrittlebonegirl9 karma

I don't really know. For me my wheelchair is such a normal part of daily life, that sometimes when meeting new people I genuinely forget that they might be wondering what's wrong with me. I think it's fine the way it is actually. When I meet a new person it feels unnatural to just tell them why I'm in a wheelchair, so I do wait for them to ask me.

pussgurka4 karma

Do you have any other proofs you can supply? :)

coolbrittlebonegirl12 karma

I'm going to have to ask you to help me out on this one - what kind of other proof would work? I had a dna test done quite some time ago but I have absolutely no idea where that is.

sungkwon4 karma

Do you or have you considered a service animal to help you with your day to day life?

coolbrittlebonegirl6 karma

I absolutely love animals but I don't think that'd be of much use to me. I can basically do everything myself, except for reaching high cabinets and stuff. Usually when I drop something on the ground, someone will reach for it and then I'll get it before them and say something like 'Well I'm closer to the ground!!'

MaroonSaints4 karma

Is it depressing to know that this will probably cause you to die sooner than most people?

coolbrittlebonegirl15 karma

Chances of it affecting my longevity are actually pretty slim. I'm also not too concerned about death as I'm very young, wasting time when I'm actually alive by being sad about a possible earlier death doesn't entirely make sense to me.

rocksteader2 karma

Do people ever ask you if you have seen the movie Unbreakable when learning of your condition?

My favorite line in the movie:

"Do you know what the scariest thing is? To not know your place in this world. To not know why you are here. That's... just an awful feeling. I almost gave up hope. There were so many times I questioned myself. But I found you... so many sacrifices, just to find you. Now that we know who you are, I know who I am. I'm not a mistake! It all makes sense. In a comic, you know how you can tell who the arch-villain's going to be? He's the exact opposite of the hero, and most times they're friends like you and me. I should've known way back when. You know why, David? Because of the kids. They called me Mr. Glass."

coolbrittlebonegirl2 karma

ctrl+f Unbreakable. There's your answer! That's a cool quote too, even if said by a psychopath. I mean Mr. Glass, not you.

redrider187x1 karma

When was the last time you've broken a bone if you don't mind me asking?

coolbrittlebonegirl2 karma

Five years ago! I recently had the anniversary which was pretty great. I gave some more context in another answer.

Yovero1 karma

I have OI Type1 as well, but I'm much older than you. It has slowly destroyed my life. There are many things you will learn and need to learn (many the hard way) as you go through life with this. I can offer some advice/experiences/insights to help spare you from at least some unnecessary suffering, if you want. There are very few people dedicated to researching or understanding OI as it's rare and without much in the way of funding. Few doctors (regardless of so-called "specialty" are knowledgeable or helpful beyond anything but basic OI stuff (like casting a bone, fixing an ear, etc). Researchers have little to offer adults with OI and know next to nothing about menopause-related changes to OI. That's where I'm at. Docs are clueless, the disease is progressing, and I'm falling apart. Please know that OI is at its worst from birth until puberty, at which point it pretty much stabilizes. But then it all starts to go downhill once normal, age-related hormonal changes begin (late 30's or so), and it just gets a little bit worse as you age and each year goes by.

Anyway, I'm curious if your hair and/or nails are perfectly normal/healthy, or if your hair is a bit dry/brittle (long hair rubs against back of shirt/sweater and splits/breaks easily, resulting in serious tangles if hair isn't kept up and off from rubbing on the shirt) or if your fingernails are a bit brittle and composed of thin layers/sheets, or are maybe see-through when wet, and/or more flexible (easy to bend instead of hard)?

coolbrittlebonegirl2 karma

Holy shit. I'm sorry to say but I feel really bad for you, from this post, you sound terribly unhappy. I hope your life will get happier and you will find a way to deal with your problems.

I don't really need to learn or advice or experience, as my life is filled with adults that also have OI Type I. Thanks anyway though. I know that there's no real interest in researching it and I don't mind, as there's loads of diseases out there that, from my perspective, are much worse, much more common and impact people's lives way more. I've also found that specialist doctors are actually very helpful to me and have helped me understood a lot of things about my disease and how it impacts me.

My hair is actually doing pretty well, considering the fact that I bleach and dye it continuously. It's strong and soft and I love it. My nails are also stronger than normal nails - I used to bite them but now I take care of them really well and they're fine.

DavidPuddy6661 karma

Do you have any problems with other people overcompensating for your physical fragility and trying to stop you from having fun?

coolbrittlebonegirl5 karma

Not really, it's mostly me stopping myself in order to protect me! It does happen a lot that people help me even though I don't want them to. People pushing my wheelchair even though I told them I didn't want them to. I was also walking my dog once and his line got stuck on something, someone asked if they should help and I said no, since I could easily get it unstuck myself and he freaks out when strangers get near him. But the guy walked towards him and fixed the line anyway, the dog freaked out completely. Why help when I specifically say no, please don't?

UlfricStormCoat1 karma

Why do you hate milk?

coolbrittlebonegirl4 karma

I just don't like the taste of it.

madinthehat1 karma

Favorite movie, TV show, and why?

coolbrittlebonegirl8 karma

Movie: Finding Neverland. My favourite tv show of all time is definitely Doctor Who. (the 2005 one) I just love everything about it, the settings, the storylines. I'm a huge escapist, so the concept of there being an infinite amount of worlds with creatures that are nothing like us to explore is amazing to me. Another thing that makes it my favourite show is Matt Smith's doctor. His childlike enthusiasm, love for the human race, I love everything about him. What are yours?

rickmuscles1 karma

Does your condition make contact sports more or less enjoyable?

coolbrittlebonegirl7 karma

My favourite sports are esports anyway.

sleepyteacher1 karma

How old were you when you broke your first bone and was that how you found out you had brittle bones or did you know early on?

coolbrittlebonegirl2 karma

I was one and a half years old, and I think that's when we found out that we had brittle bones. It's a genetic disease that my mum also has, so it all made sense.

Adolf_rockwell1 karma

Has your mom having the same disease helped you have an easier time dealing with it?

coolbrittlebonegirl3 karma

No, I've never thought about that and I don't think it helps me. She's broken less than five things in her life, the last fracture being over 30 years ago. My experience dealing with the disease is completely different than hers.

Cookie_as_a_coaster1 karma

How do you have the strength to carry on everyday?

coolbrittlebonegirl8 karma

You know, I considered writing a bit about how people always tell me I'm an inspiration for actually getting out of bed and living my life everyday but I thought that'd be too sarcastic.

I think it's easier for me because I was born with it, I've never known any other life. I've had small periods in my life where I've been able to walk, but besides that this is just normal life to me. Surely I can still suffer from not being able to do certain things (as easily) as other people, but it's not like I was an olympic athlete that suddenly couldn't walk anymore. I love my life and I don't know if I would change it if I could.

Cookie_as_a_coaster4 karma

I'm a very active and clumsy person and something like this would destroy me.

coolbrittlebonegirl12 karma

Well, it's a genetic disease so you could never just get it at a later age. You became a very active and clumsy person through your youth and upbringing (not completely true but you catch my drift), like I became a very cautious person through mine.

jrrthompson1 karma

Have you ever played Mass Effect, and if so how do you relate to Joker?

(sorry if you don't play video games, but that's the only character with brittle bone disease I've ever interacted with in the medium)

coolbrittlebonegirl3 karma

It's okay, I love video games! I'm currently in a living hell because my internet is terrible. I haven't played Mass Effect but after learning about Joker through this thread, I'm definitely interested in it!

spookification1 karma

Do you ever feel wrong for writing the date in the wrong way? ;-)

coolbrittlebonegirl21 karma

I'm in Europe, stop bullying me.

gwaddy911 karma

Do you go out drinking? Are you able to risk going into crowds?

coolbrittlebonegirl9 karma

Not really. Not in the clubbing kind of way. I have a tight knit group of friends and we do go out every weekend, but not to like a club with loud music where people dance, and that suits me just fine. It depends on what kind of crowd. I was once at a concert and I thought it'd be fine to be in the crowd and then a MOSHPIT started. I literally forced my way out of the crowd crying because I was so afraid, but the concert was still one of the best ones of my life!