Living With OI

This page is a space where people with OI can share their stories to give an insight into what life is like living with this rare genetic condition.

If you have a a story you would like to share please click here and fill out the short online form. Alternatively you can email bbs@brittlebone.org     

Parents: Life with OI Kids

Here parents discuss family life with children who have Osteogenesis Imperfecta, whether they had it or not. Topics include the diagnosis, their reactions, their child's nursery life, sibling reactions and sources of help like the BBS Support Groups and more.

Jordanne's Story

Jordanne Whiley has type IV Osteogenesis Imperfecta and from a young age has been a keen tennis player. Jordanne has competed in many international tournaments, becoming an inspiration for lots of young people.

Tom's Euro 2016 Travels

Tom and his brother have created a blog about their travels around France watching the football.  To read more see their link

Penny's Story

Penny Clapcott has type III Osteogenesis Imperfecta and despite numerous fractures over the years she has managed to achieve her dream of becoming an aerial performer. In 2012 Penny had the opportunity to perform in the Paralympic Opening Ceremony in front of millions of viewers. Click here to read the full story or watch Penny in action here.

Lewis's Story

Lewis Thomas has type I Osteogenesis Imperfecta and wanted to tell his story about his OI journey and the amazing people he has met along the way. Click here to read the full story.

Maleah's Story

In 2014 Maleah Pegg became an internet sensation with the creation of the video 'Me, Myself and OI' The video explains what Osteogenesis Imperfecta is and helps to raise awareness worldwide.

Steven's Story

Steven Hastings has type III Osteogenesis Imperfecta and attended BBS' VOICE 2012 event in Edinburgh which boosted his confidence and encouraged him to pursue his dream of becoming an extra on TV. A few months later he was featured in River City wearing his VOICE 2012 hoodie! Click here to read the full story.

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We provide information on our website for general information only. The content is not intended to be and should not be used as a substitute for professional medical advice, diagnosis or treatment. Users should not take any action or refrain from taking any action because of any information on our Website. Users should always seek the advice of their doctors and of other qualified health professionals concerning OI and other medical conditions. So far as permissible by law, the Brittle Bone Society does not accept any liability to any person relating to the use of any information on this Website.