Living with Welander distal myopathy
A rare inherited muscle condition that starts in adulthood with weakness in the hands, later spreading to the feet.
Understanding Welander distal myopathy
Weakness starts in the muscles that straighten the fingers and wrists. It later spreads to all hand muscles and then the muscles that lift the toes and ankles. It usually begins in adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Weakness in the fingers and wrists
- Wasting of hand muscles
- Foot drop
- High-stepping walk
- Clumsiness
- Changes in how a person walks
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 TIA1 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
Welander distal myopathy is caused by changes in the TIA1 gene. A child can get it from one parent with the changed gene (autosomal dominant).
Also known as: distal myopathy, swedish type; distal myopathy, welander type; gower's muscular dystrophy; muscular dystrophy, distal, late-onset, autosomal dominant; wdm; welander distal myopathy, swedish type
Patient organizations
- Muscular Dystrophy AssociationWelander distal myopathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Welander distal myopathy.
Explore research for Welander distal myopathy
Explore actively recruiting Welander distal myopathy studies with HealthSpark.
Find actively recruiting studies for Welander distal myopathy with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- Eligibility is confirmed by the study team
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Welander distal myopathy studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Welander distal myopathy
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Welander distal myopathy experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.