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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OIFE

Founding Fathers and Mothers

In 2020, the founding fathers and mothers of three OI societies sadly passed away. One of them was the first person worldwide to initiate a patient organization for OI. Many were following her example, and some years later, the idea of founding a European umbrella organization was born. Former OIFE president Ute Wallentin, has written…

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MEDICAL

A Quick jab and a glimpse of light

In Denmark some younger people with OI were prioritized to receive the COVID-19 vaccine. Read about the experiences from Jacob below.  Text written by Jacob Ø. Wittorff, member of DFOI All it took was a quick jab, and then it was over. I got my COVID-19 vaccine on a cold but sunny afternoon in January.…

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STORIES

Athletes without Permission

Our Polish delegate Aneta is planning to write an eBook about good examples from people with OI living in Europe who are physically active in different ways. Aneta herself has OI type IV and has tried many different sports and activities: swimming, scuba diving, crossfit and climbing. The project has the working title “Athletes without…

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STORIES

Jeanette Chedda – fighting for diversity!

Through social media we learned that Jeanette Chedda is running for Parliament in the Netherlands. Her main cause is disability politics and fighting for diversity. The elections are coming up in just a few days.  Can you tell us a little bit about yourself? I am Jeanette Chedda (37), I have OI type three. I…

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STORIES

Artist with OI: Pablo Ostarek

The winner takes it all! What a coincidence! Some time ago OIFE had prepared an interview with Pablo Ostarek, an artist with OI, which you can read below. And this week, we congratulate him for winning the 1st prize in the International Rare Disease Film Festival for his short film “This is not a person”!…

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OIFE

Winners of Black Pearl Award 2021

Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…

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Jenni in fancy vehicle in snowSTORIES

Artists with OI: Jenni-Juulia from Finland

Interview with Jenni-Juulia Wallinheimo-Heimonen Who are you and what do you do and in what way has OI affected your art? I’m a multidisciplinary artist and an activist making political disability arts. My passions are structural violence, aesthetics of assistive devices and issues related to women with disabilities. My background is in textile arts but…

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Small blonde woman with OI sitting in a TV-studio explaining something.STORIES

Work & OI

Interview with Anni Kyröläinen, Finland Who are you and what is your relationship to OI? I am Anni Kyröläinen. I am 31 years old and I come from Finland. I was born in Eastern Finland and after high school I moved to Helsinki from my little little hometown. I studied political science in the university…

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