When the Dystonia Europe board met in Leuven in October we were lucky enough to be invited to a tour of the DBS (Deep Brain Stimulation) Select facility which is currently on the outskirts of Leuven. I wasn’t sure what to expect but as I am currently considering DBS for myself I was keen to…
Mats Nyberg – Chairman of the Swedish Dystonia Association
My name is Mats Nyberg, I am 56 years old and I live in a terraced house just outside Stockholm together with my wife. I have a background as a researcher in quantum chemistry, but since 2003 I have been teaching physics and math in high school. In 2010 I started noticing a twist of…
Ask the Expert Webinar (Oct 30)
If you have questions about dystonia, now is your chance to ask the experts! On Wednesday, 30 October, 2025, from 18.00 – 19.30hrs CET, Dystonia Europe will hold a webinar with three dystonia experts, and the audience will be invited to share their questions with them. Our expert panelists are: Prof. Alfonso Fasano – Prof…
Dr Anna Sadnicka of the Computational Movement Disorders Lab, University College London
As both a doctor and a researcher working with people who have movement disorders, I see every day how profoundly dystonia can affect someone’s life. Dystonia is a complex and heterogeneous group of conditions, and too often, that complexity goes unrecognised. Even when research is underway, it doesn’t always align closely enough with the real-world…
Gill Ainsley – My Dystonia Journey
I was diagnosed with blepharospasm 20 years ago. My symptoms began in the autumn of 2005 when one eye began to clamp shut involuntarily. I found this a bit concerning but didn’t really take it seriously until my other eye began to do the same which soon after. I was very shocked and upset at…
