Resources for Patients


Beck, Rev. Mike, “Living in a Body with a Mind of its Own: the emotional journey of dystonia”  AuthorHouse LLC 2013

Levine, Bette “Learning, Coping, Living: a woman who describes her life living successfully with dystonia, a neurological disorder” 2002

Lewis, Brenda  Currey, “A Twisted Fate: My life with dystonia”  Friesen Press, 2013

Parker, James. N. M.D. and Philip M. Parker, Ph.D., editor “The Official Patient’s  Sourcebook on Dystonia Disorders”,  ICON Health Publications 2002

Petrangelo, Carmine “Surviving Dystonia: The truth about this rare and misunderstood disease”, 2002

Seaman, Tom “Diagnosis Dystonia: Navigating the Journey”, Shadow Panther Press,2015

Serdans, Beka, RN  I’m Moving Two: A Poetic Journey with Dystonia:, Xlibris Corporation 2000

Smith, Eugene, “Dystonia: the Disease that Distorts” Peanut Butter Publishing, 1996

Tannenbaum, Cher, “Woman of few words: My Creative Journey with Dystonia”  Gefen Publishing House Ltd. 2019

Truong, Daniel MD, Mayank Pathak MD and Karen Frei MD. “Living well with Dystonia: A Patient Guide” Demos Medical Publishing 2016

It is possible to become a member of a foundation or join a support group. Some of them have newsletters.


American Dystonia Society

American Foundation for Focal Dystonia

American Speec\h, Language Hearing Association

Backmann-Strauss Dystonia & Parkinson Foundation

Benign Essential Blepharospasm Research Foundation

Cure Dystonia Now

Distonia Italy

Down with Dystonia

Dystonia Europe

Dystonia Medical Research Foundation

Dystonia Medical Research Foundation Canada

Dystonia New Zealand

Dystonia Society

European Dystonia Federation

Movement Disorder Society

Movement Disorders Australia

National Spasmodic Dysphonia Association

National Spasmodic Torticollis Association

Spasmodic Toprticollis Dystonia/ST Dystonia

The Kurt & Seydow Dystonia Foundation

Tyler’s Hope for Dystonia Cure, Inc.

It is possible to join a Facebook group

Facebook Groups

20/30 Dystonia Group-  A forum for people in their 20s and 30s

Australian Dystonia Support Group

Cervical Dystonia

Cervical Dystonia Support Forum

Cervical Dystonia Talk

Dystonia Awareness

Dystonia Awareness Matters

Dystonia Friends

Dystonia Spouses & Loved Ones

Dystonia Support and Awareness

Dystonia Support Group

Dystonia UK

Generalized Dystonia Support Forum


Oromandibular, Blepharospasm &P Cranial Dystonia Support Forum

Parenting with Dystonia Support Forum

ST Dystonia

Support4Parents of Children with Dystonia

The European Network for the Study of Dystonia Syndromes

You may like to follow blogs, postings of Twitter accounts or youtube channels made by people with dystonia.

Blogs and Twitter

Dyfying Dystonia

Dystonia Ambassador

Dystonia Living

Dystonia and Me

Dystonia Muse