STORIES

Artist with OI: Jon Wos

Jon Wos was born in Wisconsin in 1981. He was diagnosed with OI at birth. Though this condition limited his physical ability, it heightened his sensitivity to the world around him, and, out of his love of creation, Jon began drawing as a very young child. When Jon was a sophomore in college, he won…

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Portrait Felipe MateoSTORIES

Artist with OI: Felipe Mateos

For the Artists with OI-column in the OIFE Magazine, we interviewed Felipe Mateos, a stand-up comedian from Spain.  Tell us a bit about yourself! I’m 27 years old and I’ve been a stand-up comedian for eight years. Little by little I am better known in Spain (Television, radio, social networks…) and I have many followers…

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STORIES

“OI & Pain” animation film!

Those of you who attended the «Balancing Life with OI» conference in Stockholm for sure remember the opening song «I’ve Got Pains». We have been anxiously waiting to share the animated song with the rest of you, because it was submitted to a film contest. The film with most likes and votes on YouTube wins.…

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Flying doctorsSTORIES

Flying OI Experts – Thank you!

Today we would like to express our gratitude to the two OI surgeons Dr. Aldofredo Santana (Venezuela) and Dr. Carlos Pargas (USA) for taking a week off their normally busy schedule and travel all the way from their home countries to Lagos, Nigeria as part of the OIFE Flying OI Expert programme. The 2023 project…

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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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nick giving talkMEDICAL

Interview with Prof. Nick Bishop

Interview with Nick Bishop, professor of paediatric bone diseases at the University of Sheffield, UK Who are you and what is your relationship to OI? My name is Nick Bishop and I am professor of paediatric bone diseases at the University of Sheffield in the UK. I’ve worked here for the last 25 years (nearly).…

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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…

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STORIES

Artist with OI: Jay Manuel aka “Mini producer”

Interview with Jay Manuel, Music Producer and Content creator, Georgia, USA Meet Jay “Mini Producer” Manuel, a music producer and content creator based in Georgia, USA. Despite being hard of hearing and living with Osteogenesis Imperfecta Type 3 and Autism, Jay has dedicated his career to breaking barriers and representing young professionals with disabilities in…

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