Living with Finnish upper limb-onset distal myopathy
A rare genetic muscle disease with slowly worsening weakness starting in the hands, usually in adulthood.
Understanding Finnish upper limb-onset distal myopathy
Weakness and muscle wasting start in the muscles at the base of the thumb and little finger. People usually notice clumsy hands and stumbling in their forties or fifties. Later they may develop a high-stepping walk and stiff hands. Muscle changes are often uneven from one side to the other.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Clumsy hands
- Weakness in the hand muscles
- Muscle wasting in the hands and ankles
- High-stepping walk (steppage gait)
- Stiff, bent joints in the hands
- Reduced feeling in the hands and feet
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.
- 3Consider genetic testing
Changes in HNRNPA1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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 Muscular Dystrophy Association
- 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
Changes in the HNRNPA1 gene cause it. It is autosomal dominant, which means one changed copy of the gene is enough.
Also known as: distal myopathy type 3; finnish upper limb onset distal myopathy; mpd3; myopathy, distal, 3
Patient organizations
- Muscular Dystrophy AssociationFinnish upper limb-onset distal myopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Finnish upper limb-onset distal myopathy.
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