What is your name?
My Name is Julia Kühne. I live in northern Germany, in a city called Rostock.
Julia Kühne
What are the benefits of working within a patient organisation?
Working in a patient organization is a very special experience to me, as it is the first time since I was diagnosed with Dystonia, I don’t feel alone with having this condition. There are people that can relate, that have gone or are going through the same experience as me. Furthermore, Dystonia is scarcely known around the world and to raise awareness for this condition, to exchange the latest knowledge about Dystonia and to maintain a community for others to feel not alone, is very important to me.
It also is a great opportunity to learn how patient organisations are generally working and to network with other patients and scientists from around Europe.
How do you like spending your free time?
I really like to go outside, take a walk or travel to new places. With my Dystonia being clearly visible to others, it can be quite a struggle, but I don’t want to hold back on life and I want to explore as much as I can. I live close to the sea and I love to take a walk along the shore, listen to the waves and breath the sea air. It makes me feel free in a sense. On days where there’s not so much energy in me or I just don’t feel like facing the world, I love to draw or paint. Creating art has been an important part of my life since my childhood. It takes my thoughts away from my condition, I get to express my emotions and do something with my hands.
What keeps you motivated on the tough days?
On tough days, it helps me to connect with my friends. I consider myself blessed to have them in my life. They don’t have dystonia, but they are very empathetic and always take the time to listen to my fears and worries. Also, especially on these days I try to be mindful with myself. Yoga and meditation have been a key for me in order to be more friendly towards me and others, to calm down and to embrace myself the way I am.
Julia Kûhne, Dystonie und Du, Germany
