Nemaline myopathy

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What is nemaline myopathy?

Nemaline myopathy, a genetic disorder that primarily affects skeletal muscles, causing muscle weakness (myopathy) throughout the body, but it is typically most severe in the muscles of the face, neck, and limbs.

Common symptoms reported by people with nemaline myopathy

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.
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Treatments taken by people with nemaline myopathy

No data

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

Compare treatments taken by people with nemaline myopathy

No data

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

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

Who has nemaline myopathy on PatientsLikeMe?


Age
Age Proportion # of patients
<20 4
20s 2
30s 0
40s 1
50s 3
60s 0
70+ 0
Age at first symptom
Age at first symptom Proportion # of patients
0-19 years 2
20-29 years 1
30-39 years 0
40-49 years 1
50-59 years 0
60-69 years 0
70+ years 0

Distribution of sex

Sex
Sex Proportion # of patients
Male 4
Female 6

Diagnosis status
Diagnosis status Proportion # of patients
Diagnosed 5
Not Diagnosed 0

These charts show data from nemaline myopathy patients who have completed their condition history
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