The Beginning Tristan arrived right on time, a perfect start with no complications. But around 5–6 months old, we began to notice something wasn’t right. He was making unusual, repetitive movements—and he cried so much, in distress we couldn’t soothe. We went back and forth to doctors, tried different formulas, reflux medications… yet nothing brought…
Driving License and Dystonia: Maintaining Mobility – Ensuring Quality of Life
For many people with dystonia or other health issues, a driver’s license is more than just a piece of paper. It represents freedom. It allows people to go to work, visit doctors, buy groceries, and see friends. This is especially important in the countryside where there are few buses or trains. Without a car, life…
Meet Liam Virgo – My Dystonia Story
The Sudden Onset In 2016 within a few days I lost my ability to walk and talk. I transitioned from a healthy 13 year old to one who couldn’t move or even speak. After months in hospital I was eventually diagnosed with severe Functional Neurological Disorder (FND) and Dystonia. I was suddenly and severely disabled,…
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…
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…
