My name is Emilie and this is the story of my life with dystonia. I’m not quite sure when the first symptoms started to appear, but approximately around 9-10 years of age. I first had pain in my left arm and it felt a little weak. As a child, I remember that I just…
United Kingdom – Dystonia Awareness Month September 2020 Action for Dystonia, Diagnosis, Education and Research (A.D.D.E.R.)
A.D.D.E.R. is a dystonia charity based in the North East of England and we have been supporting people with dystonia for 20 years. We are a small charity in that our committee is made up of only 7 volunteers, 6 of us have dystonia in various forms and all 7 of us give our time…
DBS in Dystonia patients: An interview featuring Profs. Ferreira and Coelho from University Hospital of Santa Maria, in Lisbon.
The following article makes reference to certain companies and their products and any opinions expressed should not be taken to be the views of Dystonia Europe or its members. The articles are written by respected authors and are provided for the information of Dystonia Europe News readers. Dystonia is a heterogenous disease, which dramatically affects the…
Norway – Contact Person Training in Bergen Norway by NDF
The Norwegian Dystonia Organisation (NDF) held a training class for contact persons last October in Bergen, Norway. On the webpage NDF have listed contact persons from within the organisation who can be contacted about dystonia. It is important that all contact persons make it clear that they are not medically trained. A contact person is…
SURVEY – IMPACT OF COVID-19 ON NEUROLOGY SERVICE DELIVERY
A survey by the European Federation of Neurological Associations, in partnership with the European Academy of Neurology PURPOSE OF THE SURVEY Many surveys have captured the impact of the Covid-19 pandemic on patients’ access to treatment and care. With this survey, we want to better understand how care pathways were reconfigured for the neurology patient…
