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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EDITORIALS

What does OIFE mean to you?

By Ingunn Westerheim, OIFE President Yesterday we received the first version of the new video about OIFE from “Balancing Life with OI”. We cannot wait to share it with the rest of you. One of the questions that was asked in the video was “What does OIFE mean to you?”. This can be a tricky…

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EDITORIALS

Grow up and speak up!

Written by Malene Sillas, OIFE Board Member.  Growing up from childhood, becoming a young adult, I’ve always felt that whatever I do, it feels like I’m the first person to do it. I remember that the first time I felt that way, I was in my second year of high school. The whole class was…

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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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Two children sitting on the groundEDITORIALS

OI & Child Abuse

In Norway, one of the most famous court cases is called the Rødseth-case. In 1981 a 19-year-old father was accused of child abuse and causing his baby girl’s death. He was sentenced to 2,5 years in prison because his five months old daughter had bruises and a fractured leg. The Supreme Court reduced the sentence…

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Two children sitting on the groundEDITORIALS

To have or not to have … children

I was seventeen the first time I attended an educational course about OI. It was primarily a course for adults of small children with OI, but Rebecca and I were nerdy enough to be interested in genetics, collagen and symptoms when we were 17, so we registered in any case. And it was at this course…

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EDITORIALS

Patients, people or partners?

OIFE believes that all clinical trials and research projects affecting OI directly, should have some kind of patient involvement. Patient involvement can happen in different ways and in different phases of a project. Sometimes advice from a new and unexperienced parent or a child is needed. Other times a person with OI, who can represent…

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EDITORIALS

Do No Harm!

Research is a strange thing. Some people think research is too slow and too complicated. Others are sceptical and wouldn’t like to be the guinea pig. From the point of a clinician the most important goal in doing research is: Do no harm! Issue Nr. 4-2021 of the OIFE Magazine is dedicated to research and…

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