EDITORIALS

When obstacles become opportunities

By Alessandra Tolaccia, OIFE Volunteer I have been suffering from chronic pain for over 15 years now, and every time I have approached a new doctor looking for help, the answer has always been the same: pain in muscles/tendons has nothing to do with OI. But why doesn’t my pain go away with the common treatments…

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CONFERENCES

Impressions from “Balancing Life with OI”

OIFE’s 5th Topical Meeting “Balancing Life with OI” took place in Stockholm, Sweden, in June 2023. The main topic of this international conference was pain in OI and its impact for instance on physical and mental health, sleep, fatigue, mobility, relationships/families and work/life balance. Here are some impressions from participants: Alessandra Tolaccia My name is…

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EDITORIALS

Pain, Pink Elephants and Peer Support

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…

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MEDICAL

OIFE Pain & OI Project

Background Pain is reported to be the main challenge for people with OI besides fractures. More than 60 percent of people with OI have chronic pain, and the percentage and complexity increase with age. In spite of this, there is very little information about how you can manage pain as a child or adult with…

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OIFE

Pain & OI Project started

On January 25th 2022 we organized the kick-off of the Pain & OI project, which is a collaboration between the OIFE and the Osteogenesis Imperfecta Foundation (USA) and a group of dedicated professionals who have experience on pain management, pain research and/or pain & OI. We had 21 participants from 10 different countries at the…

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Chronic pain in OIMEDICAL

Do you have knowledge on pain & OI?

OIFE is interested in getting in touch with professionals (PTs, OTs, psychologists, medical doctors, researchers, pain specialists etc) who have experience/knowledge about pain & pain management in OI (or related bone diseases). We are considering a mini conference and/or project related to pain & OI and we are interested in getting in touch with people…

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CONFERENCES

OIF CONFERENCE ONLINE

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…

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