What is your name?
My name is Martina Kühn
What are the benefits of working within a patient organisation?
My mother has blepharospasm among other issues. Even though I do not have dystonia myself, I’ve come to realize over time how difficult living with dystonia can be in certain situations. More than 14 years ago I started volunteering in dystonia self-help. Due to various inquiries that I received as part of my board work, some colleagues and I founded the Dystonie Förderverein Deutschland e. V. (DFVD) in 2014. In the DFVD we have special possibilities to help dystonia sufferers directly. In contrast to other organizations, we can for example offer financial help to provide treatments or individual aids. It is very satisfying to help other people and to experience that through our support, others are doing a little better making their lives a little easier.
How do you like spending your free time?
I enjoy spending time with my family and friends. In addition, my hobbies such as knitting, crocheting, and sewing relax me. Our dog Vicky is also very important. In the evenings, I like to read before going to bed.
What keeps you motivated on the tough days?
A butterfly, a daisy, a kiss from my dog or a ray of sunshine. A small smile when I could help someone is often enough to say thank you. Knowing that even the small things can help others. It’s not just the big things that can help. It is irrelevant whether the help is provided on a voluntary basis or in everyday life.
What makes you angry or frustrated?
Carelessness, disrespect, egoism, intolerance, stupidity, ignorance, narcissism….
Martina Kühn, Chairwoman Dystonie Förderverein Deutschland e. V. Germany
Below a photo of Martina’s dog.