Stefanie R. is 26 years old, and currently living in the vibrant city of Berlin. She wanted to join the OIFE Social Network Team after having met young people with OI during her volunteer service in Ghana, where people had never met anyone else with the condition — or even heard of OI organizations. Her message to young people with OI: don’t hesitate to get involved! Read more about Stefanie in the following article.

“I would describe myself as curious, open-minded, and someone who enjoys the little things in life — like a really good cup of coffee or a sunny walk by the water. I love handcrafting and doing pottery and to feel peace at the seaside.

I have OI Type 6, and I try to navigate most situations in life with a mix of humour, patience, and a healthy dose of stubbornness. While OI certainly brings challenges, it has also shaped me in many positive ways. As a child already, it gave me a surprisingly positive view on medicine — I’ve always been too curious to dislike hospitals.

It sparked my fascination with the human body, deepened my love for science, and planted the desire to give something back — drawing from my own experiences as a patient. That’s why I started studying medicine in 2020 which of course also brings challenges as hospitals aren’t exactly built with wheelchair users in mind, on the employee/professional side.

I frequently encounter assumptions about my abilities. Still, I believe we need more diversity in healthcare — especially those shaped by lived experience and that we can contribute to a more inclusive and understanding society with a healthcare system, where different perspectives matter.

At the same time, I’m not the most hard-working student. I have passions beyond medicine which I like to use for procrastination.

I’m very interested in nature, marine biology, and discovering different cultures and ways of life. I love being outside, especially near water, traveling to new places, or simply spending hours watching my aquariums at home. I enjoy indie and folk music (preferably on beaches), meaningful conversations, and jumping into spontaneous ideas with my friends.

OI has led me to a strong and supportive community that I’m incredibly thankful for! My relationship with the OI community has been a true anchor in my life.

Not only our national OI community has given me peer-group support already as a child, but also the international connections and friendships through my attendance of OIFE Youth Meetings let me build friendships and connections across Europe that continue to inspire me.

While I believe that we are just as different individually as the average population, sharing certain similar experiences with others has given me a sense of calm and confidence to go beyond my limits — and taught me the power of solidarity.

I wanted to join the Social Network Team after meeting young people with OI during my volunteer service in Ghana who had never met anyone else with the condition — or even heard of OI organizations.

Through our long-time dedicated volunteer Ute Wallentin, I’ve learned of many similar stories. It made me realize how isolating life with OI may feel in some parts of the world — especially for young people. By joining the Social Network Team I hope to contribute a little by connecting people across borders and sharing knowledge worldwide.

When asked what national OI organizations can do — and how we can better engage young people — I believe the core role remains clear: to build strong local communities that empower individuals with OI to live their best lives. This includes offering reliable information, organizing events, advocating for rights, and creating spaces of trust and exchange. But when it comes to young people, we may need to rethink how we communicate.

Many adolescents or young adults struggle with identity and acceptance, and the classic “self-help group” image might feel off-putting. To truly reach and involve them, we need to understand what holds them back — and find new, more appealing ways to meet their needs.

To young people with OI: don’t hesitate to get involved! You might not know yet what you’ve been missing — and your voice, your ideas, your energy can make a real difference. To national organizations: rethink your “design”, offer space for young voices, and trust young people with real responsibility.

Recently, I attended my very first OIFE conference in Oslo — and I absolutely loved it! It was a fantastic mix of information exchange, meaningful conversations, reconnecting with old friends, and exploring a new city. I was amazed by the energy, openness, and dedication of everyone involved. I can’t wait for what’s to come!”

This article has first been published in OIFE Magazine 2025-03.