Come join us in this year’s dystonia awareness month with focus on #dystoniajourney. In our recent work with the dystonia patient journey and also the dystonia survey of Prof Relja in 2019 we have seen that the time of diagnosis can differ from a few months to several years. Very often it depends on where…
Diet and Dystonia Survey
‘Diet and Dystonia’ is now open on our platform. The main goal of this research is to examine how diet affects dystonia, and if so how dystonia specialists could address these problems. The survey is completely anonymous, which means that no personal information will be collected. We will be very grateful if you decide to…
Under Production: Season 2 of Dystonia Europe Podcast – The Positive Twist
The first season of our podcast: The Positive Twist was launched during the pandemic, autumn 2020. We have received much positive feedback and until now the podcast has had over 2300 downloads. We have therefore decided to work on a second season. Interviews and recordings are now taking place for 6 new episodes. First episode…
“Once upon a time” a Short Film on Dystonia and DBS Treatment
My name is Pierre Colback. I’m 24 years old and I was a student in Visual Effects at the Haute Ecole Albert Jacquard based in Namur, Belgium. Being affected by a form of primary dystonia since I was 10 years old officially but unofficially longer I think. For me, it seemed obvious to study this…
Dystonia and Relationships: Preliminary Survey Results
In addition to the well-known motor features of people with dystonia, also many have been reporting non-motor symptoms. Functional impairment, pain, social embarrassment, anxiety, social phobia, and stigmatisation seem particularly common and have a clear impact on the quality of life. This might considerably influence self-confidence and could, therefore, have an impact on relationship and…
