According to the European Brain Council, there are more than 500,000 people living with dystonia across Europe, 100,000 of whom are estimated to live in the UK. While much of our work is centred around the dystonia community here in the UK, Dystonia UK has plenty of resources easily accessible for those across Europe and…
Dystonia Awareness Month
Last September we celebrated another fantastic dystonia awareness month. Focus this year was the Patient Journey*. We had created a series of carousel posts describing a fictional cervical dystonia patient. Throughout the month we followed Lilly and her journey with dystonia from the first symptoms, through the various stages of diagnosis, treatment and living with…
A randomised double-blind controlled study of Deep Brain Stimulation for dystonia in STN or GPi – A long term follow-up after up to 15 years A summary
Deep Brain Stimulation (DBS) is a neurosurgical treatment, where electrodes implanted in deep nuclei in the brain, via stimulation, normalises output in motor networks affected by movement disorders. DBS in dystonia has proven a safe and effective treatment, but variable results have been presented depending on the types of dystonia and precise targeting in the…
Dystonia Awareness Video Project
As we informed you in an earlier our newsletter, we are working on a very exciting project – a series of dystonia awareness videos. The aim of these videos is to show the symptoms of different types of dystonia for better understanding by people who have never heard of this disorder. The videos will be…
EFNA Board Meeting in Brussels
The following day there was an EFNA board meeting. Orla Galvin, EFNA Executive Director, presented the preliminary results of the survey on assessing diagnosis and care pathways of people living with neurological disorders in Europe. Over 1000 participants from 23 different countries participated in the survey. Some of the results show that: 32% of people…
