Dystonia

We’re all in this for good.

By sharing your stories and data, you will:
  • help each other live better and uncover the best ways to manage your health today
  • help researchers shorten the path to new treatments tomorrow

How much good can your data do? A whole lot, as co-founder Jamie Heywood explains in this video.

What is dystonia?

Dystonia is a neurological movement disorder in which sustained muscle contractions cause twisting and repetitive movements or abnormal posture due to disordered tonicity of muscles. Sustained muscle contraction (dystonia) may be caused by a number of conditions.

Common symptoms reported by people with dystonia

Common symptoms
How bad it is
What people are taking for it

Reports may be affected by other conditions and/or medication side effects. We ask about general symptoms (anxious mood, depressed mood, fatigue, pain, and stress) regardless of condition.
Last updated:

Treatments taken by people for dystonia

Let’s build this page together! When you share what it’s like to have dystonia through your profile, those stories and data appear here too.

Got a question about living with dystonia? Members in the forum might have the answers.

Compare treatments taken by people with dystonia

Let’s build this page together! When you share what it’s like to have dystonia through your profile, those stories and data appear here too.

Got a question about living with dystonia? Members in the forum might have the answers.

Who has dystonia on PatientsLikeMe?

  • 0 new patients joined this month
  • 224 say dystonia is their primary condition

Age
Age Proportion # of patients
<20 0
20s 11
30s 42
40s 46
50s 44
60s 48
70+ 103
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 18
20-29 years 17
30-39 years 20
40-49 years 20
50-59 years 15
60-69 years 15
70+ years 10

Distribution of sex

Sex
Sex Proportion # of patients
Male 137
Female 423

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 254
Not Diagnosed 29

These charts show data from dystonia patients who have completed their condition history
Last updated: