Living with Adult-onset nemaline myopathy
A fast-progressing type of muscle disease that starts very late in life, with weakness in the arms and neck.
Understanding Adult-onset nemaline myopathy
Nemaline myopathy is a group of muscle diseases. This type starts in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weak arm muscles
- Weakness in the neck muscles that bend the neck
- Muscle aches
- Slow movements
- Muscle disease (myopathy)
Not everyone has every symptom. GARD's list comes from the Human Phenotype Ontology.
Diagnosis
- 1Talk with your doctor
Share the symptoms you've noticed, when they started and your family health history. Notes and photos can help.
- 2See a specialist
Specialists who may be involved include brain and nervous system specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Muscular Dystrophy Association may keep lists of experts for this condition.
Care & treatment
- Care team
- Brain and nervous system specialists (neurologists); Genetic specialists (geneticists)
- Expert care
- Expert lists: Muscular Dystrophy Association
- Treatment
- GARD doesn't list specific treatments for this condition. Your care team will tailor care to your symptoms.
- Research
- Clinical trials and observational studies may be options. See the research section below.
General information, not medical advice. Your care team makes the decisions.
Everyday life
Living with a rare condition is easier with support.
- Connect with A Foundation Building Strength and other patient organizations
- Keep notes on symptoms, changes and questions for appointments
- Ask about patient registries that help research
- Look into financial aid and travel resources for care visits
Quick facts
GARD says changes in genes cause this condition, but it doesn't name a gene.
Also known as: nemaline myopathy, late onset type
Patient organizations
- A Foundation Building StrengthAdult-onset nemaline myopathy · United States
- Muscular Dystrophy AssociationAdult-onset nemaline myopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Adult-onset nemaline myopathy.
Explore research for Adult-onset nemaline myopathy
Explore actively recruiting Adult-onset nemaline myopathy studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- Eligibility is confirmed by the study team
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