Living with Autosomal recessive limb-girdle muscular dystrophy type 2W
An inherited muscle condition with severe weakness that begins in childhood and affects the heart.
Understanding Autosomal recessive limb-girdle muscular dystrophy type 2W
Weakness and wasting start near the center of the arms and legs, then reach muscles farther out. It can lead to severe weakness of all four limbs. Calves can be enlarged, the tongue can be triangular, and the heart muscle can be enlarged and weak (dilated cardiomyopathy).
Signs & symptoms
GARD doesn't list specific symptoms for this condition. The summary describes these features:
- Severe weakness near the center of the limbs
- Later weakness in hands and feet
- Muscle wasting with fat replacement
- Enlarged calf muscles
- Triangular tongue
- Heart muscle disease (dilated cardiomyopathy)
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
The Speak Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: The Speak Foundation
- 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 The Speak Foundation
- 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
It is autosomal recessive, so a child inherits a changed copy of a gene from each parent. GARD does not name a gene here.
Also known as: autosomal recessive limb girdle muscular dystrophy type 2w; autosomal recessive limb-girdle muscular dystrophy caused by mutation in lims2; lgmd2w; lim zinc finger domain containing 2-related limb girdle muscular dystrophy; limb girdle muscular dystrophy type 2w; lims2 autosomal recessive limb-girdle muscular dystrophy
Patient organizations
- The Speak FoundationAutosomal recessive limb-girdle muscular dystrophy type 2W · United States
You are more than your diagnosis
Perspectives from people navigating life with Autosomal recessive limb-girdle muscular dystrophy type 2W.
Explore research for Autosomal recessive limb-girdle muscular dystrophy type 2W
Explore actively recruiting Autosomal recessive limb-girdle muscular dystrophy type 2W studies with HealthSpark.
Find actively recruiting studies for Autosomal recessive limb-girdle muscular dystrophy type 2W 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 Autosomal recessive limb-girdle muscular dystrophy type 2W 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 Autosomal recessive limb-girdle muscular dystrophy type 2W
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 Autosomal recessive limb-girdle muscular dystrophy type 2W 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.