Dystonia Europe Winter Think Tank 2022 was held on Zoom last February. DE had a Board Meeting the day before. Members of the Think Tank are our Platinum sponsors: Boston Scientific, Ipsen, Medtronic and Merz. President Adam Kalinowski welcomed all to the Think Tank meeting and Executive Director Monika Benson gave an update on the…
Support for Ukrainian dystonia patients
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Information for Ukrainian dystonia patients seeking access to treatment in Europe This page will be updated with the new support opportunities as soon as they become available. 09.03.2022 SUPPORT IN POLAND Are you Ukrainian refugee with dystonia in Poland? In cooperation with the Polish Dystonia Association, we can help you access consultation and treatment in…
DBS study in Germany is still Recruiting Patients suffering from Cervical Dystonia
A randomized, sham-controlled trial of pallidal neurostimulation versus botulinum toxin treatment for cervical dystonia (StimTox-CD) Deep brain stimulation (DBS) of the internal globus pallidus is highly effective for various forms of primary dystonia, but is currently considered a last resort therapy for severe and medication-refractory segmental or generalized dystonia according to treatment guideline. The first-line treatment…
Meet Johan Arnfinn Warvik from Norway: My Life with and without Dystonia
After using some parts of my story as background for a presentation on “Living with Dystonia”, I was strongly encouraged to share my story in the Norwegian Dystonia Newsletter. I was born on the west coast of Norway in 1954 and have had dystonia since 1985. Normal life: Like most of us, my life started…
Dystonia Physio Exercise HUB – A Digital Platform with Exercises for Cervical Dystonia
Research has shown that Botulinum toxin injections (BoNT-inj) combined with physiotherapy provide good benefit for most people with cervical dystonia (CD). Advanced treatment with Deep Brain Stimulation (DBS) also requires physiotherapy. Repetition of exercises is important to influence brain remodelling and achieve long-term improvements. Exercises should be individualised according to the pattern, nature and problem…