As another unpredictable year draws to a close, Dystonia UK reflects on a busy year of activities, while eagerly looking forward to the potential opportunities of the New Year. Virtual activities have continued with great strength. At the time of writing, we have provided 6 ‘Reach Out, Reach All’ webinars, including one live from Scotland,…
Book about Musician’s Dystonia, by Coralie Cousin: “The Day My Hand Stopped Playing: Treating Musician’s Dystonia: Aurélien’s story”
Dystonia Europe is pleased to present the new book by Coralie Cousin, a French therapist who has been close to our Medical and Scientific Advisory Board for many years. We are delighted to welcome this book, as musician’s cramp is rarely documented or reported. With a…
Survey for patients that are diagnosed with Myoclonus Dystonia that have a confirmed mutation in the SGCE gene, and their families
We have received information from ERN-RND – European Reference Network for Rare Neurological Diseases on a survey only for patients that are diagnosed with Myoclonus dystonia that have a confirmed mutation in the SGCE gene, and their families. We are very grateful if you would please share this among your members and as soon as possible,…
My Dystonia Story – Lizzy,s Story
Hello everybody in Europe from Tuscany, Italy! I’m Annalisa and I have been suffering from cervical dystonia since 1995, when I was 28 years old. Most of you will probably know what cervical dystonia or spasmodic torticollis is. It affects the muscles of your…
A.D.D.E.R. Action for Dystonia, Diagnosis, Education and Research
This is the third year A.D.D.E.R. have designed and delivered our dystonia awareness campaign throughout the month of September. After a great deal of thought I came up with the idea of asking people to imagine what it is like to have various types of dystonia. The campaign was aimed at people who know nothing about…
