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.
How do members experience nemaline myopathy?
Top 5 symptoms reported by people with nemaline myopathy*
Common symptoms
How bad it is
What people are taking for it
Common symptom
Fatigue
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Depressed mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Anxious mood
How bad it is
What people are taking for it
Nothing reported yet
Common symptom
Stress
How bad it is
What people are taking for it
Nothing reported yet
*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.
Buoy Health’s symptom checker.
Top treatments taken by people for nemaline myopathy*
We currently don't have enough shared data that is made public for this condition.
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.
Who has nemaline myopathy on PatientsLikeMe?
Age
| Age | Proportion | # of patients |
|---|---|---|
| <20 | 4 | |
| 20s | 1 | |
| 30s | 3 | |
| 40s | 1 | |
| 50s | 2 | |
| 60s | 2 | |
| 70+ | 1 |
Distribution of sex
Sex
| Sex | Proportion | # of patients |
|---|---|---|
| Male | 5 | |
| Female | 9 |
Learn more about our community’s experience with nemaline myopathy.
Talk to people with nemaline myopathy
16
16
members say they have this condition
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Muscles, Bones and Joints
Learn from others like you living with nemaline myopathy.
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