Matilde Medum Nielsen has volunteered to help on the OIFE Youth Coordinator team. Matilde is from Denmark and was born with OI type III. She has been living in Aarhus her entire life until July 2022, when she moved to Townsville in Australia to study and fulfill her dream of becoming a marine biologist. Besides her studies she also enjoys swimming, kayak paddling, and most recently scuba diving.

Why do you love the ocean?

I think one of the main reasons I love the ocean, is because I feel so free, when I’m in the water. There’s no pain and no limits or restrictions since you feel almost weightless in water. In the ocean there is also relatively few obstacles you can accidentally injure yourself on and so the risk of a fracture decreases. As people with OI, I’m sure we all value those moments where we’re able to feel bodily freedom, because we don’t have to worry too much about the possibility of a broken bone or our muscles aching. At least that is how I feel, when I’m in the water.

Why did you want to become part of the OIFE Youth coordinator team?

I hope to be the support, that some young people with OI might need, whether it is regarding health, social life, education, work, or something else. I also hope I can inspire young people with OI, to fulfill their own dreams and achieve what they desire in their life, by sharing my own thoughts and experiences.

Besides providing support, it is also part of my task as a OIFE coordinator to organize the yearly Youth Events. I have participated in 6 events myself, and I would highly recommend all young OI’s to participate in an event at some point.

It is a great opportunity to bond with other young people with OI from different countries and share experiences and stories. Here I have found some of my very best friends, that knows exactly how it is to live a life with OI. I think it is very important to be met with comprehension for the struggles we all deal with – but also just to have a lot of fun together.

Feel free to always Email me (matildemn@hotmail.com) or meet me on Facebook, and I will do my very best to get back to you as soon as possible!

You can also get in touch with OIFE’s Youth Coordinators at youth@oife.org