Living with OI

Osteogenesis Imperfecta also known as OI is a rare condition affecting the connective tissue. The severity of OI can vary from mild to severe. Healthcare is usually focused on treating the many fractures that people with OI experience in a life time and improving bone mineral density.

New insights into psychosocial aspects of OI

Recently a research study has been conducted to understand the impact OI can have beyond the physical symptoms. This research was enabled by Foundation Care4BrittleBones working with healthcare providers and the OI patient organization VOI in the Netherlands. More then 250 responses were received.  The research has surfaced that 40-60 % of people with OI are dealing with psychosocial issues. Every phase of life can have special challenges for someone with OI.  This may result in intense emotional responses. Find out more with the video above!

Thanks to this research, it is now much clearer, how significant the impact of OI can be in addition to the impact on the body itself.  It is crucial that people with OI take their psychosocial health seriously,  that they dare to speak about any issues and that they are able to get professional help, if this is necessary.

Please support research like this with a generous donation to the Care4BrittleBones Foundation.

Research for OI is not possible without your support. Together with our partners we make a tangible difference for a better quality of life with OI.

Alle ansehen
€ 15 14-03-2020 | 19:21 An: Een beter leven voor Amber & iedereen met OI Ik heb niet alleen gedoneerd omdat ik familie ben, maar omdat er meer onderzoek moet komen!!
€ 5 14-03-2020 | 15:21 An: Een beter leven voor Amber & iedereen met OI
€ 10 14-03-2020 | 14:22 An: Een beter leven voor Amber & iedereen met OI
€ 5 14-03-2020 | 14:09 An: Een beter leven voor Amber & iedereen met OI
€ 10 14-03-2020 | 13:52 An: Een beter leven voor Amber & iedereen met OI