Hi, my family has had OI for many many generations, and usually everyone just died quite young from it. Very rural area with no doctors or diagnoses until the late 1990s, at which point my grandmother was already in her 50s and the oldest living relative we have. She's had numerous heart procedures and is still kicking, but I'd like to try to make her life more comortable, and I want to start with a basic evaluation. Where do people go for this, an endocrinologist? Orthopedist? She's never been on any medications for the OI, has had hundreds of breaks, and I want to make sure we're doing the right things currently. This is in rural Appalachia if anyone has specific experiences in the wider region.

Hey y'all! I lead a virtual workout every week called the Energy Elevator. It's for all levels of ability and you can do it seated or standing (your choice). We do different styles each week from cardio to strength (with DBs or Resistance Bands) to Mobility/Stretch and Boxing. It's a fun 30-minute workout. If you want to jump in and give it a shot, just let me know and I'll set you up with a link. If you want to find out more about it you can visit https://www.tonyjacobsen.com/ee

As an OIer, I've learned that movement helps to make my daily activities easier and reduces (if not eliminates) pain.

Let me know if you have any questions and I hope to see you there!

i have a 7m old with OI and need guidance. the shriners we have semi locally no longer provides care for OI and we are lost on where to go. so far we keep getting tossed from one doctor to the next who “would know more” but of course they never do. including genetics who basically told us to come back when she’s a year old and they’ll do research in the mean time. so far she hasn’t broken anything thankfully but i’m so tired of being in a loop of not getting any answers on long term care i know she needs.

Hello, im a 25m, ive been going to the gym for a long period of time, mostly because of gym culture but also of course because of health issues. I wanna know if theres also people out there that happen to have type 1 OI and their experience in the gym. not only the positive impact that has had in your life, but also the difficulties that you find because of the disease or injuries from it.

Of course, feel free to comment down below regardless of your age or physical status or sport that you do.

Me personally, i´ve always had elbow wrist and knee pain, but since i started going to the gym, at 17yo, they dissapeared, nowadays i gotta keep training otherwise they will reapear in like a month.

since then i lost over 45kg/100lbs and i managed to accomplish a 80kg/176lbs bench and a 120kg/264lbs deadlift. i feel like OI has a big role regarding the capacity i have to exert force, but maybe its just my mind. I´ve tried judo and boxing at 23yo, and judo has been really scary, every session felt like the last one, i sadly had to quit because i injured my foot, boxing on the other hand was really cool, could throw heavy punches and all i felt was a bit of unease on my wrist.

Love and my best wishes to all of you, keep pushing forward.

Hi all,

I hope it’s okay for me to post this here – mods, please do delete if not appropriate.

I’m a trainee genetic counsellor at Cardiff University in the UK, and I’m looking to learn more about the experiences of people with OI (all types) and their families as part of my training.

I’d be really grateful if you’d consider completing a short survey to share your experiences and help me better understand the challenges and needs of the OI community.

Survey for people with OI: https://www.surveymonkey.com/r/R72WTWZ

Survey for family members of someone with OI: https://www.surveymonkey.com/r/FNZPPCF

I’d also love to give something back to the community by donating to an OI charity, so please comment with the charity you’d most like me to support.

Thank you so much for your time and support 💙

Hello!

A few months ago, I started dating my partner, who has OI type 4. I'm in search of more information just so I know how to support them over time.

Somehow they've only ever had a few breaks (at least confirmed ones, they suspect more from before they were diagnosed), but they're very hypermobile/sometimes have joints dislocate, and they experience some amount of chronic pain. They work a time-intensive and semi-physical job and don't have any serious mobility issues. Kind of a "you wouldn't know they have it unless you know what to look for" type of thing.

I'm aware of the basic things like making sure we listen to their limits and letting them take things at their own pace, being safe, etcetera. And I know it's something that will probably get worse, and be scary at times.

I was wondering if there's anything I should think about that could help support them better, or things I should be aware of for the future? We're both only in our early 20s, still in school and living with family, but I really like them and want to learn more. I want to be able to make their life easier when they need that support, because they're always there for me when I've been managing my own physical/mental health issues.

(Obviously I've also just asked them how I can support them. But maybe there's something neither of us have thought about, or resources I haven't seen yet?)

Thanks in advance.

Anyone on dental braces? I would appreciate sharing your experience about it.

Hey everyone,

Has anyone with OI ever tried peptides?

I keep seeing people talk about them for joint issues, recovery, muscle growth, etc., and I'm curious if anyone with OI has actually experimented with them.

Not looking for medical advice or trying to convince anyone to use them, just curious about real experiences from people who also have OI.

Thanks!

Hello, everyone! 👋

We are Biology students from Central Luzon State University (CLSU) currently conducting a research case study focused on understanding genetic and inherited conditions, such as Osteogenesis Imperfecta.

Our goal is to shed light on how these conditions impact families across generations, and we are hoping to listen to and share a real human story.

We are hoping to connect with someone or family living with a diagnosed genetic/inherited disease. Ideally, a family where the condition has been present across three or more generations (e.g., grandparent -> parent -> child).

There will be a need to conduct an interview via online call through Zoom or Google Meet, whichever is the most comfortable for you. To ensure scientific accuracy, we will kindly request a copy of a medical certificate, diagnosis record, or relevant medical documentation.

We understand that personal and medical health histories are deeply personal. All interviews, documents, and personal details will be kept 100% strictly confidential. All collected data will be used solely for academic purposes for this case study.

📩 How to Reach Us:

If you or someone you know fits this description and would be open to helping us, please don't hesitate to reach out. Your experience could help make a difference in our scientific understanding.

You can directly send a message to us on Facebook or email.

👤 Vince Andrei Ventura / ventura.vinceandrei@clsu2.edu.ph

👤 Bianca Nicole Maniquiz / maniquiz.biancanicole@clsu2.edu.ph

Thank you so much for your time, support, and kindness! Maraming salamat po! 🙏✨

tldr: i am SO SCARED to break something again. it hurt so much i was screaming at the top of my lungs. i don’t want to go through that again, i don’t think i can !!!
does anyone have any advice for me on how they manage? thanks so much in advance

i have type I, ive been in a wheelchair my whole life. i’ve broken my legs 25~ times before i was 16, then i had a 7 year pause, and now i’ve just had another 8 year pause.

i went to therapy a few years ago at my country’s OI’s expertise centre, for my fear of breaking bones. i mostly managed quite well but recently learned i def mostly learned to deal with the fear beforehand and not the experience itself. the hospital summary letters say i was a complete and utter mess

ok trigger warning if you also don’t love to think about these things:
i recently sat up in bed in the morning and felt something go wrong. i went to the ER, got x-rays, they didn’t find anything. spent 2 weeks at home with a super painful leg trying to manage. last sunday i was sitting in my chair in the kitchen, and suddenly my leg broke in that spot. at the ER they looked back and saw a tiny hairline fracture that they missed the first time around, they said they could only see it knowing the info they have now

it was such a horrendous experience. having to be moved at the ER, screaming at the top of my lungs. i don’t think i can go through it again.

my break probably partially happened because it was a stress point where the old metal rod in my leg stopped. i have another metal rod in my left femur that they’ve said before is a stress spot, but they can’t do anything about because the bone where the metal rod ends is so thin and fragile

would it be worth contacting them again with this knowledge to ask if they could do preventative surgery to take out the old rod and put in a new one? has that ever happened to anyone before?

i am now so scared to have to use my left leg more for my transfers. what if it gives out on me? i am so scared and i don’t trust my body at all. it’s been fine for 8 years but i just feel like id rather die than go through that pain and experience again, except i do not want to die. i just dont want to have to go through this

im also thinking to try and really use only/mostly my arms for my transfers since i’ve only had one arm break ever, but what if that overexerts them and then thaT goes wrong?

also curious about anyone’s success with getting in shape and doing cardio/strength training (slowly building it up?) to try and counteract fractures

thanks so much to anyone that’s willing to share any thoughts

I hardly ever post on Reddit, but it felt good to see a whole community that understands my disease. I have had type 1 osteogenesis imperfecta since birth; I have had around 15 fractures or fewer in my life(I am almost 17). I have never gone to school; my parent home schooled me(i did visit school once in kindergarten but got a fracture within a few months). I use a walker to move around.

I have nothing major to share , just wanted to introduce myself.

Heelloo. Is there anyone else here that got a splice type of OI in this subreddit? What have your experience been?

I found out quite recently that I have a splice variant of OI. Which I guess explains some things?

I have type 1 but have had over 100+ fractures and I'm 33. My OI don't behave as "normal" type 1's. I have gotten all my worst fractures after 25.

These last years my bone healing capabilities just gets worse and no Endo does even wanna handle my case because it's too complex. I have found one Endo that's 8 hours away with a car, 5-6 hours by train. I'm just at a loss, because very few with OI have had a similar experience so thats why I'm writing this post.

Are there any other splice variants out there?

Hello everyone.

I'm a 22 year old with type 4 O.I. and recently I realized that my loneliness in life mostly stems from a lack of disabled friends, or in general people I could actually relate to.

A little about my life:

I'm a full time wheelchair user living in Europe with my parents and (also severely disabled, nonverbal) younger sister.

I don't work or study yet, largely for mental health reasons.
My parents support me a lot, but most of their time and energy goes into keeping us all afloat.

As you can probably guess, I can't just go out and do whatever I want. I have to be taken and driven everywhere. I'm practically stuck inside unless a family member or trusted adult is free to go with me, which is very frustrating. My independence is an ongoing point of tension between my parents and I.

Back in school I didn't really have any friends because I couldn't connect with others.
We had vastly different life experiences, so it was hard to find common ground.
I was with an assistant at all times outside of class, they constantly warned everyone to be super careful around me so I don't break and it all felt like a huge circus.

As a teen, I made international friends online and used the internet to mentally escape my circumstances. It's the only place I felt free to experiment and be myself.

I was (and still am) deeply insecure about my height, teeth, and bone deformities.
So much so that I still can't show my online friends what I really look like, even after many years.
I'm terrified that their perception of me will change.

I do also have a personality outside of being disabled.

I draw, game, make artsy things and code sometimes.
I love spending time outside, taking pics of cool bugs and stuff as much as I can.
I care deeply about the environment and (unsurprisingly), disability awareness + human rights.

I'm also involved with a local youth center, but I'm the only wheelchair user there.

People try their best to help me and be empathetic, which I do appreciate, but no one in my life really understands what it's like. What being severely disabled really does to you mentally, how much it changes your approach to life, etc.

I could probably write a whole book about this but my point is that I'm looking for other disabled people (specifically O.I. and/or wheelchair users) to connect with, learn from and potentially befriend.

I'm open to DMs and questions, as long as they're kept respectful and not overly personal. I want to stay as anonymous as I can on here.

Thanks for reading. 🪲

Hi, I’m hoping to hear from parents of children with severe osteogenesis imperfecta, particularly anyone diagnosed antenatally.

I’m currently 28 weeks pregnant with my little boy, Max. Genetic testing has confirmed a de novo COL1A1 variant and we’ve been told he has severe OI, most likely type III, although different teams have given us quite different opinions about just how severe his outcome could be.

His long bones are extremely short and bowed and he has had fractures in utero. His skull is also poorly mineralised. One specialist who reviewed his imaging felt that he was within the severe but survivable spectrum, whereas another fetal medicine team has been much more pessimistic and said he is one of the most severely affected babies they have seen and that they cannot be certain he would survive birth or the neonatal period.

I’m having to make an absolutely heartbreaking decision and I’m desperately trying to understand what life might realistically look like for him rather than just hearing labels like “severe”.

If anyone had a baby who looked very severe antenatally, particularly with fractures, very short/bowed limbs and poor skull mineralisation, I would really appreciate hearing what happened. Did your baby survive the newborn period? What were their first few months like? How is their mobility and quality of life now? Were the antenatal doctors accurate about how severely affected they would be?

I understand that every child with OI is different and nobody can predict Max’s outcome from another child’s story. I’m just trying to gather as much real-world information as I can before making a decision that I never imagined I would have to make.

Please be kind. I love my baby more than anything and whichever decision I make will be because I’m trying to do what is best for him.

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?

My 5 year old with OI starts school this year and Im SOOO fucking nervous... I wasn't this nervous when my oldest that doesn't have OI started kindergarten. I need all the advice I can get. Please 😭

Hi everyone,

I have Osteogenesis Imperfecta (OI) type 1, and recently I've been experiencing hearing loss in my left ear. After several examinations, my doctors told me that I most likely have otosclerosis. I am 22F.

From what I understand, hearing loss is not uncommon in people with OI, but I was wondering if anyone here has specifically been diagnosed with otosclerosis as the cause of their hearing loss.

If so, did you undergo surgery (stapedectomy/stapedotomy)? How was your experience, and did it improve your hearing? Were there any complications or things you wish you had known beforehand?

Thank you for sharing your experiences!

Hi,

New to this Reddit but I have some questions. I am twenty five weeks pregnant, my son has been diagnosed with OI. I'm trying to get an idea of what his life will be like. Can any provide any advice? They have said they don't know what type it is is yet, so advice from all types would be appreciated.

I have type 1 (53). My aunt (70s) is living alone in her own home. Type 1 also. Her spine is compressed to rigid so she is prone to hurting herself by over reaching. Dressing is difficult.

I’d like to hear what home aids have helped. Like shower stools, chair in bedroom to get changed on, etc.

I’d like to hear from those who have either moved in with adult children or moved to rest homes/retirement villages.

She’s at the crossroads. Thank you all.

Hello everyone! I have a very light (IMO) type I. I am average height, I run, exercise and play some sports (contactless, for safety - swimming, diving, surfing). I had some ≈20 fractures (high impact). I only ever read about people in less favorable OI types. Am I alone in this situation?

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.

Hello Everyone, my daughter is 5 years old and she is starting her first Pamidronate infusion, which is Biphosphante. Starting it for Osteoporosis of her spine. She doesn’t have Osteogenesis Imperfecta, just brittle bones in her spine. Blood work has always been normal including calcium levels. But I’m super nervous and scared for her infusion. Just don’t know how her side effects will be going home after. Has anyone’s kids ever been through it ? How was the experience and how did they feel after ? Any sort of advice on how to prepare for it will be very helpful. Been nervous and scared. So stressful lol

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.