Liesanne M. Centen,#1,2 David Pinter,#3 Martje E. van Egmond,1,2 Holm Graessner,4 Norbert Kovacs,3 Anne Koy,5Belen Perez-Dueñas,6 Carola Reinhard,4 Marina A. J. Tijssen,1,2 and Sylvia Boesch7 Background Since the first European-wide evaluation of dystonia management in 2016, several efforts have been made to improve dystonia-care. One of these was the development of the Dystonia Disease Group as a part of the European Reference Network for…
Dystonia UK
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…
