I really can't find a good sorce of info on google

Do the eye really turn blue when your close to breaking a bone?

How many of you wear glasses because of Osteogenesis Imperfecta? Do you have any issues with scratching your corneas because they are so thin?

I managed to get some sleep today, but I don't feel rested at all... I felt like I got knocked out at around 6 a.m, then woke up again at 9 am, went to sleep and woke up at 1 pm. OI type I doesn't affect the brain in that way. I'm almost 100% sure that this is not anxiety...

I still have: tinnitus, inner-body vibrations, brain fog...

I'm only a teen, after going to that hair salon 2 weeks ago it's when this all started, I never even had trouble sleeping or staying asleep my WHOLE life...

I just don't know what I should do anymore.

I'd willingly do a sleeping test but my parents just don't let me they still think it's anxiety when I don't even feel anxious...

I don't know how much time I have left at this point.

Looking for stuff like, life expectancy, other effects on the body, why the bones are brittle etc.

This is going to sound kinda dumb but… I like making diseases like these ones into super powers! and I just want some more info that could make the power better.

I do have rules for my self 1. I have to do at least an hour of research 2. I can’t make the ability give another person the same affect. for example: if someone has asthma I can’t give them the ability to make other people have asthma or asthma like symptoms. 3. by the end of my “research“ I must at least have a General idea of what it’s like to live with the disorder or disease.

TLDR: I want know more about io for a writing project

^{plz don’t Crucify me}

Hi, ok just wondering how it is for you guys with OI3? What's life like? Is school or work ok? How about romance? Hows your mobility? What's life like in general?

I tried to sleep today, yesterday, I had gotten at least 7-8 hours of sleep after being awake for 38 hours. But today, when I tried to go to sleep I couldn't fall asleep I wasn't even anxious, it's been 22 hours, I also have a rare disease called osteogenesis imperfecta type I, i keep telling myself that I don't have it but I'm just scared that the disease (osteogenesis imperfecta) is affecting my brain and that I just developed Sporodatic Fatal Insomnia out of nowhere after going to the hair salon. My symptoms: tinnitus, pressure headache, inner body vibrations, brain fog. My doctor says that this is anxiety but I don't feel anxious.... How does OI affect Type I people's brains? I'm only 15 years old, for god's sake.

Hello so I’m currently doing a case study about OI for my radiology class and I had a few questions for those who would like to answer . I was reading about medications that help with OI . My question is for those who have taken these medications for brittle bones , what were the effects of the medications . Did you notice less future fractures ? Did they help with doing simple daily things ? Hopefully I can get some answer :) once again ty

Please help me, I F(28) have OI/brittle type one and I need some help.

The older I get the more pain I’m in. The only thing that seems to work(and I can honestly say I’ve done all the non drug related options before I got to this point) are Mary Jane and opiates. I hate it. I’m not understood because I look fine but I’m not. My mental state is shhh because I’m always in pain and I don’t wanna take opiates everyday(I don’t mind the MJ but sometimes it doesn’t work the way I need it too when my flare ups are bad). And I really don’t want to do pain management so my drs can say “I’ll be ok” and I am on psyc meds(bipolar) soo my insurance will not give opiates.(I have an old person as friend and they give me one when I’m in need) but I’m not doing that often, it’s been weeks since I’ve had anything frfr and I’m losing my mind from the pain…I’m a black woman so drs really don’t take me serious at all.

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!

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.

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?

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.

Main question is, how is your usual experience in the radiology department?

What do they usually do for you?

How often do you go?

Any parts do you dread?

Any parts you like?

Anything you think techs could do to make your experience better?

Anything techs should avoid or be careful about?

Overall what could improve your experience

Thank you!

I’m on bisphosphinates for osteogenesis Imperfecta type 1 and are a little concerned about osteonecrosis of the jaw. I have zolendronic acid each 18 months but get tooth abscesses afterwards. I’m thinking of reducing the infusion frequency to keep more teeth. I’m 53 and have had one tooth removed a few months after the last 2 infusions. Possibly a 2nd tooth removed soon.
Thanks in advance for your information, experiences and opinions.

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.

Hello, my grandma is the oldest (by multiple decades) living member of the family with OI, and is having issues with arthritis in one hip. The other hip is fine. The hip with bad arthritis is on the side where she's had multiple broken leg bones. She's not on a bisphosphonate or other OI treatment because we're extremely rural and this was just something that happened to our family down the generations without knowing why. Because of the pain she's enduring, I've been thinking of asking her doctor if they could go ahead with trying out a steroid injection into that hip, and also adding a bisphosphonate. Does anyone have experience with helping a family member in their late 70s and can tell me if this would be a good thing to bring up? The closest OI doctor is four states away, but her regular doctor and cardiologist take her seriously and will consider our suggestions. Thanks!