You Are Not Alone - Stories of Persons with Dystonia

Submitted by Intern on February 2, 2017 - 12:21pm

We would love to hear your dystonia story.  

If you’re interested in sharing your story with us, it could be included in an upcoming newsletter or e-newsletter. 

Read on for some of the latest stories of persons with Dystonia below.


Generalized Dystonia

Muscle Groups Affected: Throughout the body

Shelby's Story

Brenda's Story

Sarah's Story

Shelby Newkirk

Brenda Currey



Cervical Dystonia (Spasmodic Torticollis)

Muscle Groups Affected: Neck

John’s Story

Astrid’s Story

Laurie’s Story

John Fraser




Cervical Dystonia (Spasmodic Torticollis) Continued

Muscle Groups Affected: Neck

Neil’s Story

Cheryl’s Story  

Jennifer's Story



Jenn Ashton

 Sumbul’s Story 






Functional Dystonia

Muscle Groups Affected: face, neck, shoulder, torso, and/or limbs

Alicia’s Story






Blepharospasm / Meige Syndrome

Muscle groups affected: eyelids

Myoclonus Dystonia

Muscle groups affected: neck, torso, arms

Paroxysmal Dystonia and Dyskinesias

Muscle groups affected: hands, upper body, or lower extremities

Colin’s Story

Casey's Story  

Jason's Story 



Jason Young


Oromandibular Dystonia

Muscle groups affected:  face, jaw, and/or tongue

Dopa-Responsive Dystonia


Thomas's Story

Anna's Story



 Thomas Wade


Anna McNabb



Other Stories


 Yann's Story

Jade's Story

Claire's Story

A person in a green shirt

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Jesse's Story Jackson's Story



Jackson Mooney