Overview
Tall stature-long halluces-multiple extra-epiphyses syndrome is an extremely rare genetic condition that affects how the skeleton grows and develops. The name describes its three main features: being taller than expected for age and family background, unusually long big toes (halluces), and the presence of extra growth centers (called epiphyses) in the bones, particularly in the hands and feet. Epiphyses are the rounded ends of bones where growth occurs during childhood, and having extra ones is unusual and can be seen on X-rays. People with this condition may also have other skeletal differences, such as changes in the shape or proportion of their hands, feet, and other bones. The tall stature is typically noticed during childhood as the child grows faster than peers. The extra epiphyses generally do not cause pain but are an important clue for diagnosis. Because this syndrome is so rare, with very few cases described in the medical literature, the full range of symptoms and the best approaches to management are still being understood. There is currently no cure or specific treatment for this condition. Care focuses on monitoring growth and skeletal development, managing any orthopedic issues that arise, and providing supportive care as needed. Genetic counseling is recommended for affected families to understand the inheritance pattern and recurrence risk.
Key symptoms:
Tall stature or being taller than expectedUnusually long big toesExtra growth centers (epiphyses) in bones seen on X-rayLong fingers or toesDifferences in hand or foot shapeAdvanced bone age on X-raySkeletal proportional differencesPossible joint flexibility changes
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
Treatments
No FDA-approved treatments are currently listed for Tall stature-long halluces-multiple extra-epiphyses syndrome.
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Specialists
View all specialists →No specialists are currently listed for Tall stature-long halluces-multiple extra-epiphyses syndrome.
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 Tall stature-long halluces-multiple extra-epiphyses syndrome.
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.What specific skeletal features does my child have, and how might they change over time?,Is genetic testing available to confirm the diagnosis or identify the cause?,How often should we have X-rays or growth monitoring done?,Are there any activities or sports my child should avoid?,Should we see an orthopedic specialist or endocrinologist?,What is the chance that future children could have the same condition?,Are there any new research studies or registries we should know about?
Common questions about Tall stature-long halluces-multiple extra-epiphyses syndrome
What is Tall stature-long halluces-multiple extra-epiphyses syndrome?
Tall stature-long halluces-multiple extra-epiphyses syndrome is an extremely rare genetic condition that affects how the skeleton grows and develops. The name describes its three main features: being taller than expected for age and family background, unusually long big toes (halluces), and the presence of extra growth centers (called epiphyses) in the bones, particularly in the hands and feet. Epiphyses are the rounded ends of bones where growth occurs during childhood, and having extra ones is unusual and can be seen on X-rays. People with this condition may also have other skeletal differe
How is Tall stature-long halluces-multiple extra-epiphyses syndrome inherited?
Tall stature-long halluces-multiple extra-epiphyses syndrome follows a autosomal dominant inheritance pattern. Genetic counseling can help families understand recurrence risk and testing options.
At what age does Tall stature-long halluces-multiple extra-epiphyses syndrome typically begin?
Typical onset of Tall stature-long halluces-multiple extra-epiphyses syndrome is childhood. Age of onset can vary across affected individuals.