CORNELIA (CONNY) JUNGO, SWITZERLAND

I am Cornelia Jungo from Switzerland, 50 years young and I have OI, as well as my mother and husband. OI affects me in many ways, both physically and emotionally. I have to be extra cautious in everyday activities to avoid fractures. Simple things like walking on uneven ground or lifting heavy objects can be risky.

I experience chronic pain and fatigue, which can make daily life more challenging. Beyond the physical effects, OI also impacts my social life and independence. I sometimes need assistance with certain tasks, and I have to carefully plan activities to ensure they are safe for me. However, I have learned to adapt and find creative solutions to overcome obstacles.

I represent the Schweizerische Vereinigung Osteogenesis Imperfecta: (SVOI) which was founded in 1986. Currently, it has 135 members, including 62 active members, 50 family members, and 23 passive members. The organization is run by volunteers. We have an advisory board, and this work is compensated.

As every year, our annual general meeting will take place at the Swiss Paraplegic Centre in Nottwil. The event is held on a weekend – 30 – 31 of August. It includes not only the general meeting but also medical lectures, opportunities for exchange among members, and discussions with attending experts. Additionally, as always, the conference will provide ample time for sharing experiences and personal conversations.

When I am not doing OI-work I am a wheelchair dancer and work for an inclusive dance company. I love traveling, reading, hiking on accessible trails with my power device that pulls the wheelchair and spending time with family and friends, especially when good food and drinks are involved. Life is about enjoying the moments.

In my opinion, the most important task for national OI organizations is to provide support, advocacy, and education for people with OI and their families. Raising awareness about OI is crucial to ensure better medical care, inclusion, and understanding in society.

Support and research is very important – helping individuals access specialized doctors, promoting research for better treatments, and ensuring that up-to-date medical knowledge is shared with professionals. Another important task is community building. Living with OI can be challenging, and having a strong network of people who understand these challenges is very important. National OI organizations can offer support groups and events to connect individuals and families. Finally, OI organizations should work to improve accessibility, influence policies, and ensure that people with OI have equal opportunities in education, employment, and daily life.

Living with OI comes with challenges, but also strength and resilience. Stay connected, support each other, and never stop advocating for better awareness and care. Together, we make a difference!

This article was first published in OIFE Magazine 2-2025.