Living with dystonia. A questionnaire study among members of the Swedish Dystonia Patient Association

The dystonias are movement disorders with sustained muscle contractions causing twisting movements or abnormal postures. A patient survey sent to 268 members of the Swedish Dystonia Patient Association was returned by 221 (82%). Most of the patients (81%) were women and the most common form was cervical dystonia (spasmodic torticollis). Median age at onset was 41.6 years. The time from onset of symptoms to correct diagnosis was on average 6 years. 21% had relatives with movement derangements. Injection with Botulinum toxin and physical therapy were ranked as the most effective treatments. Many patients expressed a need for more physical therapy as well as a desire to meet the same physician each time and to receive more intensive psychological support.