MEDICAL

Bisphosphonates & Pain in OI

Interview with Mercedes Rodriguez Celin, pediatrician at Shriners Hospital for Children, Chicago Who are you & what experience do you have with Pain & OI? I am Mercedes Rodriguez Celin; I am a pediatrician from Argentina with a specialty in Growth and Development. I worked for ten years at the Skeletal Dysplasia Clinic at Garrahan…

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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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OIFE

In 2021 we made an impact together!

Dear members of the international OI-community!  In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…

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[Image shows a gouache/ink/pencil cartoon illustration I made in my sketchbook. Against a black background, a yellow orb frames an illustration of me sitting on the floor, crooked white femme with glasses and hair in a messy bun. I look down lovingly at the ghost of kid-me sitting in my lap, and hold the back of her head gently. She looks back at me and holds juniper (fluffy black cat) in her lap. Around the orb is abstract decorative designs of yellow vines, sparkles, and dots.]STORIES

10 tips to parents of children with OI

Unsolicited advice for non-disabled parents of disabled children By Haley Brown, artist from the US Unsolicited parenting advice from someone who isn’t even a parent is…everyone’s favourite thing, right? I know, I know, it can be really rude and annoying. But I wrote this from a place of deep love – for disabled kids AND…

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STORIES

Life as a “Shadow Child”

Often siblings of children with a chronic illness are called “shadow children” because they live in the blind spot of their parents. They are often alone with their grief and put their own needs aside for their siblings’ needs. My name is Kristine Holm Laursen, but just call me Krisser. I am now 26 years…

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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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RESEARCH

Sleep apnea & fatigue in OI

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…

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A 3D printed person inside a plastic bag as part of art exhibitEDITORIALS

Tired, fatigued or just lazy… ?

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…

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