What is myotonic dystrophy?

Myotonic dystrophy is a chronic, slowly progressing, highly variable inherited multisystemic disease. It is characterized by wasting of the muscles (muscular dystrophy), cataracts, heart conduction defects, endocrine changes, and myotonia. Myotonic dystrophy can occur at any age.

How do members experience myotonic dystrophy?

Top 5 symptoms reported by people with myotonic dystrophy*

*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.

Top treatments taken by people for myotonic dystrophy*

Who has myotonic dystrophy on PatientsLikeMe?

Age

Age Proportion # of patients
<20 0
20s 1
30s 6
40s 18
50s 9
60s 9
70+ 5

Distribution of sex

Sex

Sex Proportion # of patients
Male 15
Female 32

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What is myotonic dystrophy?

Myotonic dystrophy is a chronic, slowly progressing, highly variable inherited multisystemic disease. It is characterized by wasting of the muscles (muscular dystrophy), cataracts, heart conduction defects, endocrine changes, and myotonia. Myotonic dystrophy can occur at any age.



Common symptoms reported by people with myotonic dystrophy

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 myotonic dystrophy

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

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


Compare treatments taken by people with myotonic dystrophy

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

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



Who has myotonic dystrophy on PatientsLikeMe?

  • 1 new patients joined this month
  • 48 say myotonic dystrophy is their primary condition

Age
Age Proportion # of patients
<20 0
20s 1
30s 6
40s 18
50s 9
60s 9
70+ 5
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 6
20-29 years 3
30-39 years 6
40-49 years 1
50-59 years 1
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 15
Female 32

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 19
Not Diagnosed 4

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