Overview
Myopathy with hexagonally cross-linked tubular arrays is an extremely rare inherited muscle disease. The name comes from a distinctive pattern seen when muscle tissue is examined under an electron microscope — tiny tube-like structures arranged in a hexagonal (six-sided) pattern are found within the muscle fibers. These abnormal structures are a hallmark of this condition and help doctors distinguish it from other muscle diseases. People with this condition typically experience muscle weakness that can affect various parts of the body. The weakness may involve the limbs, making it harder to walk, climb stairs, or lift objects. Some individuals also experience muscle stiffness, cramping, or exercise intolerance, meaning their muscles tire out more quickly than expected during physical activity. The severity of symptoms can vary from person to person, with some people having mild weakness and others experiencing more significant limitations. There is currently no cure for this condition. Treatment focuses on managing symptoms and maintaining function. Physical therapy, occupational therapy, and supportive care are the main approaches used to help patients stay as active and independent as possible. Because this disease is so rare, research is limited, and much remains to be learned about its full range of symptoms and long-term outlook.
Key symptoms:
Muscle weakness in the arms and legsExercise intolerance or easy muscle fatigueMuscle stiffnessMuscle crampsDifficulty walking or climbing stairsDifficulty lifting objects overheadReduced muscle bulk or muscle wastingGeneralized fatigueDifficulty with physical activities
Variable
Can be inherited in different ways depending on the underlying gene
Variable
Can begin at different ages, from infancy through adulthood
Treatments
No FDA-approved treatments are currently listed for Myopathy with hexagonally cross-linked tubular arrays.
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Specialists
View all specialists →No specialists are currently listed for Myopathy with hexagonally cross-linked tubular arrays.
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 Myopathy with hexagonally cross-linked tubular arrays.
Community
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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.How severe is my condition based on the biopsy and other test results?,Is genetic testing recommended for me and my family members?,What kind of physical therapy program would be most helpful?,Are there any activities I should avoid to protect my muscles?,How often should I have follow-up appointments to monitor my condition?,Are there any clinical trials or research studies I could participate in?,What signs or symptoms should prompt me to seek urgent medical attention?
Common questions about Myopathy with hexagonally cross-linked tubular arrays
What is Myopathy with hexagonally cross-linked tubular arrays?
Myopathy with hexagonally cross-linked tubular arrays is an extremely rare inherited muscle disease. The name comes from a distinctive pattern seen when muscle tissue is examined under an electron microscope — tiny tube-like structures arranged in a hexagonal (six-sided) pattern are found within the muscle fibers. These abnormal structures are a hallmark of this condition and help doctors distinguish it from other muscle diseases. People with this condition typically experience muscle weakness that can affect various parts of the body. The weakness may involve the limbs, making it harder to w