You Are Not Alone - Stories of Persons with Dystonia

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

Drug-Induced Dystonia

Tardive Dyskinesias

Thomas's Story

Anna's Story

Living a Full Live With Tardive Dystonia


 Thomas Wade


Anna McNabb

Watch/Listen to Stories of How Persons are Thriving with Tardive Dystonia

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Other Stories


 Yann's Story

Jade's Story

Claire's Story

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Jesse's Story Jackson's Story Jacqueline's Story
Jesse Jackson Mooney

Jacqueline Bell




Thank you to Dystonia Medical Research Foundation (USA) for allowing us to share the information and patient stories on Tardive Dyskineasias. The DMRF is a 501(c)(3) non-profit organization dedicated to advancing research for improved dystonia treatments and ultimately a cure, promoting awareness, and supporting the well-being of affected individuals and families.


Last update: Aug 2022