Living with Distal myopathy with posterior leg and anterior hand involvement
A genetic muscle condition that slowly weakens the muscles in the front of the hands and the back of the lower legs.
Understanding Distal myopathy with posterior leg and anterior hand involvement
This condition, also called distal ABD-filaminopathy, causes muscle weakness that slowly gets worse and is the same on both sides of the body. It affects the front of the hands and forearms and the back of the lower legs. It usually begins from the teen years to adulthood. Walking, running, and balance can become harder over time.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness in the lower legs and feet
- Foot drop (trouble lifting the front of the foot)
- Weak finger muscles
- Shrinking small muscles of the hand
- Trouble running or walking
- Muscle pain with exercise
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 FLNC 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
GARD says changes in the FLNC gene cause this condition. It is autosomal dominant, meaning one changed copy of the gene can cause it.
Also known as: distal abd-filaminopathy; myopathy, distal, type 4; williams distal myopathy
Patient organizations
- Muscular Dystrophy AssociationDistal myopathy with posterior leg and anterior hand involvement · United States
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