Overview
Laing distal myopathy (also called Laing myopathy or MPD1) is a rare inherited muscle disease that mainly affects the muscles farthest from the center of the body — such as those in the feet, lower legs, and hands. It is caused by changes (mutations) in the MYH7 gene, which provides instructions for making a protein called slow myosin heavy chain, an important building block of muscle fibers. Because this protein is also found in the heart, some people with Laing myopathy may have mild heart involvement as well. The disease usually begins in childhood, though the age when symptoms first appear can vary. One of the most recognizable early signs is weakness in the muscles that lift the front of the foot, making it hard to walk normally — a problem called foot drop. Weakness can slowly spread to the hands, neck, and other muscles over time. Most people with Laing myopathy progress slowly and continue to walk throughout their lives, though some may eventually need mobility aids. There is currently no cure for Laing myopathy. Treatment focuses on managing symptoms and maintaining quality of life. Physical therapy, occupational therapy, and assistive devices like ankle-foot orthoses (braces) are the main tools used. Regular heart monitoring is also recommended. With good supportive care, many people with this condition live full and active lives.
Also known as:
Key symptoms:
Foot drop — difficulty lifting the front of the foot when walkingWeakness in the lower leg muscles, especially the shin areaWeakness in the hands and fingers, particularly in extending themWeakness in the neck muscles, making it hard to hold the head upSlow, gradual worsening of muscle weakness over timeAbnormal walking pattern or gait changesMild muscle wasting in the lower legs and handsPossible mild heart muscle involvement (cardiomyopathy) in some peopleDifficulty with fine hand movements like buttoning clothesFatigue with physical activity
Clinical phenotype terms (20)— hover any for plain English
Autosomal dominant
Passed on from just one parent; each child has about a 50% chance of inheriting it
Childhood
Begins in childhood, roughly ages 1 to 12
FDA & Trial Timeline
1 eventPharosgen Co.,Ltd — PHASE1
Data sourced from FDA regulatory filings and ClinicalTrials.gov. Updated periodically.
Treatments
No FDA-approved treatments are currently listed for Laing distal myopathy.
View clinical trials →Clinical Trials
View all trials with filters →No actively recruiting trials found for Laing distal myopathy at this time.
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Treatment Centers
8 centersBaylor College of Medicine Rare Disease Center ↗
Baylor College of Medicine
📍 Houston, TX
🏥 NORDStanford Medicine Rare Disease Center ↗
Stanford Medicine
📍 Stanford, CA
🔬 UDNNIH Clinical Center Undiagnosed Diseases Program ↗
National Institutes of Health
📍 Bethesda, MD
🔬 UDNUCLA UDN Clinical Site ↗
UCLA Health
📍 Los Angeles, CA
🔬 UDNBaylor College of Medicine UDN Clinical Site ↗
Baylor College of Medicine
📍 Houston, TX
🔬 UDNHarvard/MGH UDN Clinical Site ↗
Massachusetts General Hospital
📍 Boston, MA
🏥 NORDMayo Clinic Center for Individualized Medicine ↗
Mayo Clinic
📍 Rochester, MN
👤 Mayo Clinic Center for Individualized Medicine
🏥 NORDUCLA Rare Disease Day Program ↗
UCLA Health
📍 Los Angeles, CA
Travel Grants
No travel grants are currently matched to Laing distal myopathy.
Community
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Start the conversation →Latest news about Laing distal myopathy
Disease timeline:
New recruiting trial: Clinical Trial to Evaluate the Safety, Tolerability and Pharmacokinetics of MPD-1 in Patients With Advanced Solid Tumor
A new clinical trial is recruiting patients for Laing distal myopathy
Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
Rare disease caregiving can be isolating. Connect with counseling and peer support.
Family & Caregiver Grants
Financial assistance programs specifically for caregivers of rare disease patients.
Social Security Disability
Learn how rare disease patients may qualify for SSDI/SSI benefits.
Questions for your doctor
Bring these to your next appointment
- Q1.What specific mutation was found in my MYH7 gene, and what does it mean for my prognosis?,How often should I have my heart checked, and what signs of heart problems should I watch for?,Should other family members be tested for this condition?,What type of physical therapy is most helpful for Laing myopathy, and how often should I go?,Are there any clinical trials or research studies I might be eligible for?,When should I consider using ankle braces or other mobility aids?,Should my breathing be monitored, and if so, how often?
Common questions about Laing distal myopathy
What is Laing distal myopathy?
Laing distal myopathy (also called Laing myopathy or MPD1) is a rare inherited muscle disease that mainly affects the muscles farthest from the center of the body — such as those in the feet, lower legs, and hands. It is caused by changes (mutations) in the MYH7 gene, which provides instructions for making a protein called slow myosin heavy chain, an important building block of muscle fibers. Because this protein is also found in the heart, some people with Laing myopathy may have mild heart involvement as well. The disease usually begins in childhood, though the age when symptoms first appea
How is Laing distal myopathy inherited?
Laing distal myopathy follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Laing distal myopathy typically begin?
Typical onset of Laing distal myopathy is childhood. Age of onset can vary across affected individuals.
Which specialists treat Laing distal myopathy?
2 specialists and care centers treating Laing distal myopathy are listed on UniteRare, sourced from ClinicalTrials.gov principal investigators, published research, and the NPPES NPI registry.