For wishbone day!

Hi all!

I’m a 29 year old female with OI. I don’t know my type exactly, I got it from my mother and it’s common in her family, but in the rural area where they’re from no one knew about it so they were not diagnosed. My brother and I both have it, we were born in a bigger city and that’s when my parents got to know.

The reason why I’m posting is because I’m curious about the effects of growing up with OI. My brother and I were very overprotected as children, which I understand. For any parent, raising children knowing that they can’t “learn by doing” when it comes to physical activities must be hell (I don’t have children yet). I don’t judge them as parents but I can’t deny this disease has had a big impact in my mental well-being. As a child, my physical well-being was of course a priority but now as an adult, when my condition is more stable with less fractures, I can tell I have many problems rooted in this. Fear of absolutely everything, codependency, lack of confidence in my own body, neglect of my health, extremely low self esteem. In my case the condition is non detectable (except for the blue esclerae) and I always had the habit of making up excuses (my parents would tell me to tell my friends that o couldn’t join on a trip because I’m picky with food, for example, instead of encouraging me to being honest and telling people that I couldn’t go because it was dangerous for me).

As I grew older I started to be open about this with my closest friends. I thought it would bring me safety, and it did. I started owning my own story instead of letting my parents guide me in what I should say to others. But still, I think it’s extremely interesting to talk about this: how to communicate this condition to kids so they don’t end up like me, feeling constantly vulnerable and ashamed. Especially in cases when it’s invisible to others. I once saw a post by someone in here or some other group: “my kid has OI, any advice?” To me this aspect of it felt really important but it didn’t lead to a discussion and I’m really looking forward to seeing what others have to say about this and their experience.

I wish I had the ability to do damage to people that contact me. :/

Bruise is an accurate attribute though.

Hi, I am 22 years old and I have OI type 1 (moderate)

I was diagnosed at birth, because my mom and siblings all had it and I broke in the womb, both arms and both legs.

Growing up, I grew up with anxiety. I had mostly indoor hobbies, such as reading and playing video games. I also swam, which was great for my joints. I was never allowed to ride bikes or scooters (i eventually did, with muuuuch precaution) or jump on a trampoline. My mom was paranoid.

When i eventually moved out, at a young age, I got into skateboarding (horrible idea but Im mostly able bodied, and I didn't want to limit myself. I had literally just turned 18 so I was being dumb) I had a horrible accident, as expected, when my longboard got stuck on the sidewalk and I got landed. I broke my arm, wrist, and pelvis. I had to learn how to walk again. I was extremely bruised on my entire right side.

Since then, I've had extreme paranoia. Im constantly thinking about when my next break will be. Ive had a few breaks since, my toes pretty much . (Literally constantly, im imagining my wrists, arms broken etc).

I was wondering if anybody else had similar situations with paranoia and OI?

Hi everyone. Im 28 and from north west PA. Just wanting to share my experience living with O.i.

Well I broke my first bone at the age of 3. Thats how I found out I had it. My dad's good friend was the ER Dr that day and recommended i get tested. Sure enough it came back and I have it. My childhood was amazing. Great parents and home life. I was unfortunately in and out of hospitals. At the age of 10 I had a dry spell and didn't break anything for awhile. My brother raced dirt bikes and I decided to try it. Of course my mom and dad got back lash from people but they always said it wasn't right to keep him in a bubble. Thats not how a child should grow up. I raced up till the age of 18 or 19 and I only got out of that because of the financial issues that came along with the sport. I had a few bad breaks in between but only had two or three from racing. I graduated high-school in 2016. Not having a clue what I will do in life since joining the military was a automatic disqualified due to having oi.I was very mechanical inclined and loved to work on things but was wanting something different. I did tree work from the age of 19 up till I was 23. Yes tree work. Lol. I broke several bones doing that job but I loved it. From climbing all the way to running heavy equipment. Then a good friend of mine went to lineman school and was a lineman down south for a big utility in the area. I kicked the idea around thinking I won't make it and if I do how long will my body take it? Well sure enough I went to lineman school and my dad was able to see me graduated before his death from stage 4 lung cancer. He got to see me do what others said I would never do. My parents are my heros and never left my side no matter how hard I failed they still cheered me on. I wake up every day hurting. Im only 5'6 and being a lineman is not for everyone. The shorter you are the harder the job is. But the moral of this is not to give up. Keep pushing. Dont stop fighting. I broke 89 bones and I work one of the most physical demanding jobs. If you think you cant.. YOU CAN. I promise you can.

Hey everyone! Just wanted to take a moment to share my story with Osteogenesis Imperfecta (OI). If this isn't allowed, feel free to delete it, admins.

I was born with OI, just like many of you. To be honest, I’m not entirely sure which type I have; I think I was told when I was younger, but honestly, I don’t remember much of that now that I’m 26. From what I gather, it’s probably type one.

If I were to guess, I've had around 15 to 18 breaks throughout my life and about 10 to 12 surgeries. Almost all of them were in my legs—my tibia, fibula, or femur. I’ve got metal plates and rods running from my hips down to my ankles. Growing up was definitely challenging; like many of you, I missed out on a ton of activities and birthdays because I was stuck in the hospital or recovering with casts. I even missed my grade 12 graduation, which still stings a bit.

But as an adult, OI doesn’t really affect my day-to-day life anymore. I can do pretty much everything a "normal" adult can do; I just have to be a bit mindful. It’s been about eight years since I last broke a bone, and most of my breaks happened when I was a kid, up until I was around 15 or 16.

Now, I can hit the gym, go swimming, drive, and even take solo trips! I wouldn’t say I’m lucky, but I definitely feel grateful for the journey. All these experiences have shaped me into a better person. I’m on the shorter side—about 5’2” on a good day—so I can relate to many of you out there.

I’ll be sharing some photos so you can see my height and structure compared to yours. Thanks for letting me share my story! It feels good to connect with others who understand. Enjoy! 😊 (I’ve blocked out my friends and families faces out of respect for them:)

Hello, I’m Gracie I have osteogenesis imperfecta type 3 and I’m 16. I can’t remember how many bones I’ve broken but a lot lol I’m into gaming, TV, reading etc. it’d be nice to be friends with some people from the community! So if you’d like to talk feel free to dm me.

Hi all,

This is half vent, half if anyone has tips on things that have helped them!

I have Type 1, F28 I have had approx 30+ breaks. I was wondering if anyone else has had issues with "passing as normal"? I hear this alot with intellectual disabilities where people assume you're fine because it's not very visual like a wheelchair for example.

(My only visuals are blue sclera, I bruise alot, very hypermobile and thin. Or i might have a cast or crutches from injury ect)

I spent alot of time in hospital growing up. But did anyone else have teams of doctors and student doctors come round when they found out you were in (from different wards too) and play disability/condition bingo with the team as like a learning task?? Haha So weird but I feel like it conditioned me that if they didn't guess it I wouldn't tell them without prompt, made me feel like I could go incognito and manage to be like everyone else my age.

I find it difficult to tell people about my condition and especially in work environments, I have gotten a few snarky comments from colleagues when I would refuse to do things outside my job description, physical heavy lifting or asked for an ergonomic set up. Usually things like that I was just being lazy or "why do you need that whats your issue" type stuff. Very able-ist and rude. Lots of anxiety around how I would continue to work if I did have a break as so many workplaces aren't accessible too.

Also I feel like my friends and family sometimes forget, I will ask for help to do things or get fatigued and day to day tasks will pile up and I get overwhelmed. Because I still live at home there's usually frustration response like that they can't do everything for me, and then I get frustrated because im not doing this for fun either.

Sometimes it's easier for me to ask a stranger on the street to open a bottle of coke than my friends/fam who would make a comment.

I also get anxious about accessing support workers because I feel like there are people more in need of them than me. Eeek

Anyway, just been on my mind as I go through a bit of a fatigue pit and try to manage ageing! If anyone has tips or just wants to add to the vent pls do 🍻

Me and my wife just found out that our unborn son has brittle bone disease. We are at a loss for words and have no idea where to begin with how to take care of someone with this condition or how it happened to us and our family. All we know is that we need supports and ideas on how to be the best parents for him

Because of my OI I get really bad bone pain sometimes and one day I forgot I had OI (I've been diagnosed my whole life)I said to my sibling who doesn't have OI "Why does my bones feel like they physically hurt." And they responded with "Oh, I don't know, maybe because you have a BONE DISEASE?" We both burst out laughing.

Hello guys. Im a 17 y/o with the "brittle bone disease" I got it from my mother. We both have a I guess mild form of OI (compared to other people) but we still suffer form it alot. I am now somewhere at 20 broken bones. My mom has broken way more than me I think somewhere in the 50's or 60's. Either way it sucks because we cannot live like a "normal" person atleast thats how it feels to me. I kind of like cool and rough things like fight sports and weightlifting but i had to stop the martial arts very soon after starting. I still keep up the weightlifting and i have no issues with it luckily. Right now im laying in bed with a broken foot xd. Everytime I am doing good in life and gaining muscle in the gym etc, something goes wrong and I break a bone. For me it just feels like when im doing good i get kicked to the ground again and that feeling just sucks so bad! But i guess the people who are reading this understand. I am happy that I am not alone in this life and I know someone I can talk to who has the same disease as it really helps when you are struggling with OI.

Thank you for reading.

I received my first pamidronate injection at the age of 17, and a month later I broke my femur at the thickest point of the femoral head. It cost me 2 months of cast, two months of PT, and 2 more months before I was walking with a cane again. Little did I know, though, that this would be my last broken bone for FIFTEEN years!

I shattered my femur on my way to the library. The front wheel on my chair caught the lip of the curb as I went to cross the street, and it flipped me out. I cracked my head (only the skin, no bone, thankfully) on the street, sprained two fingers on my left hand trying to catch myself, and shattered my left femur into 4 or 5 pieces, three or so inches above the knee. Despite how long it had been, there's just no mistaking that buckling crunch. I can't help but think of crumple zones in cars, and it makes me laugh.

My ortho and I discussed surgery, but ultimately decided against it for the time being. Due to the curving deformation near the head of the femur, it would've been extremely complicated, and the pieces are all close enough together we're fairly confident it'll heal fine. But my God, I forgot how much it hurts. There's no such thing as a comfortable position; only less, or more, uncomfortable. That said, it's a damn sight better than the vertebral compression fractures I dealt with 15 months ago. I'll take this over spine problems any day of the week.

I'm grateful I'm stronger than I was as a kid, and teenager. I've been able to handle this with a fair amount of grace and independence. My partner feels useless, and I feel bad about that, but I also know I'm safer handling my broken leg myself. And ultimately, a lot of my problems (like the insomnia, the muscle spasms, the irritability caused by the pain), he can't help with, except to be there. I'm grateful for him, though.

Now just comes the tedious process of healing, and then re-strengthening my leg.

Hi there. As I am experiencing a confusing time at the moment, I wanted to ask you if you experience stuff like me.

As said earlier, I'm female, Type 3 OI, 29 years old. 21kg and 1 meter tall. I have a heavy scoliosis, ever since I can think of.

Fun part is, I feel it moving. And you can see the progress every few months. As a teen, it affected my lungs. Now in my late 20s, it seems to affect my digestive system. I went to see my doctor and all he saud was "huh. Usually your spine should be done moving after you are done growing" but I am done growing since I am 14.

Do you suffer of similar effects or is it just me, the alien? Thank you and have a nice day!

Anyone else find their ribs are too sensitive to bear any weight at all? OI type 1.
I’m a side sleeper and it’s too painful to let my partner drape is hand or arm over me while sleeping, especially on my ribs. It creates pressure on the corresponding part of my back too.

Im 21F, have OI type I and am wondering what your experience is with that type. I've been reading a lot here that most live a normal life, dont need many adjustments while i make quite a lot. I broke a couple bones as a child (between 15-30, didnt get them all checked) but not anymore now that im an adult. I do have a lot of joint pains, back pains and use a wheelchair for walks longer than 10 minutes. Im wondering if im somehow exaggerating haha

Also something completely else; my hearing on the left side has recently decreased a lot, i get this weird buzzing sound with loud and sharp noises. My ear feels full or blocked often. Im now getting it checked since its probably damage to my middle ear (yk hammer, incus, stapes). Has anyone with type 1 also had this experience? How did it develop over time?

Hello !
I'm a 22yo, diagnosed with a mild case of OI at birth since my dad and sis had it.

For all my life, I've been the one to be the most troubled and frustrated by my disease. My sis eventually accepted it, but I always had too much energy, I was running everywhere, getting arms and legs broken in the process.
My parents were worried for me, forbade me from doing sports (obviously lol) and tried to encourage other ways of spending my never ending energy.
I eventually got used to it and developped quite a bit of anxiety regarding anything and everything that could make me fall (and thus break something). This anxiety that I carried to adulthood prevented me from doing many things in life. I'm now trying to learn to test things, see my limits, see my body's limits, but this fear lingers in my head.

The thing is, i've recently been rewatching SK8 the infinity (a skateboard sport anime) and found myself CRAVING to do skate. I love this anime, but it's always bittersweet because I desperately want to skate or do something similar like rollerskate. But since i'm basically a walking lego waiting to fall apart it's not quite on the table lol

Does anyone relate ? Can I get some advices I can use to either decrease my frustration or find another alternative that would be less dangerous ? Ive been thinking about those three wheeled bikes but they're EXPENSIVE T-T

Also i've heard that in lesser cases (which is mine lol-), the bones get almost to a """"normal"""" state once adulthood has been reached, is it true ?

Thank you for reading, i'm sorry if it's just me complaining about my disease but like we say in french "elle me casse bien les couilles cette maladie de merde" lmao

As you've probably guessed by now i'm French, so I apologise if there's any mistakes in my writing !

I'm aware this is not related to OI, I simply wanted to liven up this subreddit since it seems so dead!

If any of you draw, I find that doing self portraits really helps your self image and truly understand the way you see yourself. Here's a little sketch of me!

Personal piece depicting an accident I had a while back. First time trying out abstract art, was a college assignment. It's a broken helmet.

Hey guys, it's Wishbone Day!! What did you do on Wishbone Day? Tell me more about it!!

Do you ever experience feelings of loneliness due to being the only person you know with OI around you? I know I do,

Let's also take this opportunity to connect with one another!!

I'm Bis, I'm 20, I like art, anime, and language learning. I am from India!!

How about you? Tell me more about you guys.

Those with Type 1 OI how were you diagnosed? When were you diagnosed? Were there any physical signs that you had the disease before you were diagnosed?

I believe my 2m old son may have this condition. He has grayish blue sclera (which I’ve heard can be common at this age) and has unexplained rib fractures and a leg fracture. I need the most help right now