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,…
Emma, one patient who underwent DBS for dystonia and taught me a lesson
Benedetta Storti1,2, Camillo Foresti2, Roberto Donati 3 1 Department of Neurology, Milano Bicocca, Italy 2 UOS Neurophysiology, UOC Neurology ASST Papa Giovanni XXIII, Bergamo, Italy 3 UOC Neurosurgery ASST Papa Giovanni XXIII, Bergamo, Italy Introduction Dystonia associated with DYT1 mutation is an early-onset isolated dystonia usually first apparent with focal symptoms. Over time, the…
Improving quality of life of people living with Dystonia
Deep Brain Stimulation (DBS) is a safe and well-established therapy that can alleviate the symptoms of dystonia. When used in conjunction with visualisation software, such as GUIDETM XT, it becomes a more efficient and effective therapy. Following on our recent newsletter in Dystonia Europe (Spring 2021 Edition, page 9-10) presenting the benefits of GUIDETM XT…
Milan’s Clinic for movement disorders, Botulinum toxin and personalised rehabilitation plans
The Sol Diesis clinic for musicians, that has been running since 2004 within the IRCCS Don Gnocchi Foundation, is devoted to the prevention and treatment of neuromuscular diseases of professional and amateur musicians. “The patient’s medical and musical history, and a careful observation of the musician when he performs- says doctor Rosa Maria Converti, head…
“Dystonia can be overcome!” says Maestro Accardo
Maestro Accardo Taking part in the first National Day against this rare condition, the famous violinist said:” At the Don Gnocchi Foundation I found outstanding doctors and physiotherapists, thanks to whom I’ve learnt to understand my body” Salvatore Accardo, the internationally acclaimed violinist, was a testimonial of the professionalism and humanity of the…
