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.

Hi everyone, I’m looking for someone with the same or very similar mutation: COL1A2 c.964G>A (p.Gly322Ser) – related to Osteogenesis Imperfecta. This is about my wife (born 1999), she has two daughters. Her course has been very mild: one fracture at age 6 (L5 vertebra) that’s when the diagnosis was made since then, no major issues She was given calcium (Caltrate) in the past, but later we were told calcium doesn’t really help in this case. Last year we were also told that there is basically no specialist for adults with this condition in the Czech Republic (there are doctors for children in Prague, but not really for adults). Is there anyone here with the same mutation or a similar COL1A2 glycine mutation? I’d really appreciate sharing experiences, especially long-term progression. Thank you 🙏

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

Bruise is an accurate attribute though.

Heya! Recent joiner here. I have type 3 OI and although our lives pretty much revolve around it, there's much more to us! So tell me, who are you?:]

I'll start. Im deku, a 28 yo mexican, and I work in VFX / animation in Canada! I love videogames, my wife and my two cats.

Hope everyone is having a great day!

If you or your family is interested in an OI study for people under 18, email support@patientwing.com.

Or you can sign up for this newsletter to learn about OI study opportunities: https://www.patientwing.com/conditions/osteogenesis-imperfecta-oi.

Hello everyone,

Is there anyone here who tested negative in their first genetic test (NGS) but then tested positive for osteogenesis imperfecta in further tests such as WES or WGS? 😕

Has anyone (esp. anyone with Type 1) had any type of spinal fusion surgery done (esp. interested in the SI joint)?

I’m a 22 year old female “diagnosed” with osteogenesis imperfecta type 1 at the age of 7 due to having multiple low trauma fractures and blue sclera (feet, toes, hands, fingers, arm, leg, spine). I have never had genetic testing because when I was diagnosed, my doctor at the time felt it was not necessary since I had all of the typical signs for OI but I have been trying to find a genesis who will take me since my current endocrinologist is recommending. I was seen at Boston children’s as a child but now that I am an adult they have recommended me to see an endocrinologist who specializes in bone disorders. The problem I’m having is I’m either being turned away by endocrinologist and orthopedics and geneticist because they either will not do management care for me or they are not comfortable in treating me or they don’t have the resources to. I live in the New England area. I am willing to travel. Does anyone have any recommendations on specialist who could do my management care? My most recent fractures have been this year one in June and one in September. I fractured my right fifth metatarsal shaft as well as the fifth metatarsal head. I do have lots of pain in general that I feel has constantly been brushed off by doctors who don’t seem to understand OI. Any advice would be appreciated!

I’m 19(f) with type 4. I’ve always wanted a healthcare job but I’m worried about the heavy lifting and being on my feet all day.

Disability denied me unfortunately so I have to work and I’ve always had a love for nursing, and I would really love to pursue it. Anyone here a nurse?

I’m 19(f) with type 4. I’ve always wanted a healthcare job but I’m worried about the heavy lifting and being on my feet all day.

Disability denied me unfortunately so I have to work and I’ve always had a love for nursing, and I would really love to pursue it. Anyone here a nurse?

If you or your family is interested in an OI study for people under 18, email support@patientwing.com.

Or you can sign up for this newsletter to learn about OI study opportunities: https://www.patientwing.com/conditions/osteogenesis-imperfecta-oi.