> Osteogenesis Imperfecta > Stories

300 years

My family has traced our Osteogenesis Imperfecta back 300 years into Ireland. Well, the University of Minnesota did. It rarely misses a cousin here or there. We have type 1 in varying degrees. My aunt broke only a few bones, but my mom broke hundreds. I haven't fractured too many large bones, but I have a lot of joint issues and my son has had 80 plus fractures. He's only 20 years old. We all have hearing loss and everyone, except me, have dental problems. Many of us have heart problems and asthma problems.

I would so much rather have a fracture that heals then the pain goes away, than have to live with this chronic pain and watch my son live with chronic pain already. He already has spinal stenosis and disc problems and spinal arthritis like his mom. I was bullied in school and hoped that would've been a non-issue for my son in a whole new millennium, but kids are still cruel and he was bullied too when he broke his back in 5th grade and had to wear a plastic brace for 9 months.

So, we are a team. We learned to do things our way and think outside the box to get things done around our home. My house isn't very handicap accessible, so when we're fractured we do a lot of scooting and hopping, and cleaning just has to wait. Life goes on. We make do. Right now we're both trying to figure out how to earn money when we're unable to work. It'll all work out.

World map of Osteogenesis Imperfecta


Find people with Osteogenesis Imperfecta through the map. Connect with them and share experiences. Join the Osteogenesis Imperfecta community.