October 5, 2021

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,…

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September 10, 2021

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…

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September 8, 2021

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…

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September 5, 2021

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…

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September 1, 2021

“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…

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