The Balancing Act: Navigating Pain and Life with OI in Stockholm 34 percent of all individuals with OI report that pain has influenced their career choices, and 30 percent also state that pain affects their social life. This is just one of the many facts we learned during the OIFE’s Balancing Life With OI conference…
The IMPACT Survey – how we identified knowledge gaps and created a meaningful survey for the OI-community The IMPACT Survey was an international research project exploring the real impact OI has on people’s lives. The survey was run by Sam and Maria from the Wickenstones Company – an experienced scientific agency who, OIFE, OIF…
Interview with Verity Pacey, Physiotherapist & researcher, Sydney, Australia My name is Verity Pacey and I’m a physiotherapist from Sydney, Australia. I began working with children with OI around 20 years ago now. I had the privilege to work in a specialist multidisciplinary clinic for children with OI – the only one in Australia at…
By Ingunn Westerheim, OIFE President I am going to start this editorial with a quote from the Australian physiotherapist Verity Pacey. You can read an interview with Verity in this OIFE Magazine, which is a special edition about OIFE around the world. “Don’t wait for your healthcare team to ask you about pain and fatigue…
REGISTRATION IS OPEN – EARLY BIRD DEADLINE JANUARY 31 Lack of understanding and poor management of pain severely impacts the quality of life of children and adults with OI. Under the title “Balancing life with OI” we are organising a topical meeting on the neglected subject of the causes, assessment and management of pain in…
Dreaming of a good night’s sleep and a day without caffeine By Heidi Arponen, OIFE Medical Advisory Board In 2015 we started a project to study fatigue, quality of sleep and its relation to daytime well-being at the University of Helsinki and Helsinki University Hospital. Initial motivation for the study arose from reports of individuals…
It’s not something I do very often. But every time I move to another apartment, I’m thinking “never again”. It’s close to a returning nightmare. Needing help with most of the practical stuff because of my disability, doesn’t make it any better. For every box that needs to be moved or carried, every lamp that…
In place of the in-person OIF National Conference this year, the Osteogenesis Imperfecta Foundation in the USA will host a Virtual Conference on July 10-12, 2020. The Virtual OIF Conference will provide live online versions of some of the most popular informational and social sessions at the biennial OIF National Conference. People from all countries…
