Raul looking tiredMEDICAL

OI & Disability Burn-Out

“Disability Burn-Out”: Internalized Ableism and its consequences! By Raul Krauthausen, disability activist with OI A disability can be stressful and sometimes trigger burnout. Often, one’s own internalized ableism plays a major role – in other words, the pressure of having to gain a raison d’être through performance and functionality. This can rule a lifetime. It…


Psychosocial research in OI

Psychosocial network & patient centered outcomes research Interview with Dr. Kara Ayers My name is Kara Ayers. I’m primarily connected to the OI community because I have OI (Type V) myself. My husband has OI as well and we were both fortunate to grow up with the benefits of being socially connected to others in…


The art of being unhappy

Can we be unhappy or do we keep on with that unbreakable spirit which people with OI all seem to have? Why do we want to be so happy? Think about this with me for a while! Imagine: you were a 2 year old toddler and your mother or father asks you to draw something…


Unbreakable spirits…or?

The last three months has been a special period of time for OIFE and myself. I will never forget the moment when Eero told me that our vice president Ida Männistö (30) was no longer with us, but had passed away suddenly in her home. To me, Ida was both a colleague in the OIFE…


Psychosocial aspects in OI

In 2019 Care4BrittleBones would like to build up a network to foster knowledge exchange around psychosocial aspects of OI. The network will be led by Dr. Kara Ayers (photo) from Cincinnati children’s hospital, USA and Dr. Claire Hill from Sheffield’s children hospital, UK. The purpose of the network is to explore key topics of shared…

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