Overview
Humero-radial synostosis, bilateral, is an extremely rare skeletal condition in which the humerus (the upper arm bone) and the radius (one of the two forearm bones) are fused together on both sides of the body. This fusion, called synostosis, means the elbow joint cannot move normally, severely limiting the ability to bend or straighten the arms. The condition is present from birth, as the bones fail to separate properly during fetal development. It is important to note that this entry has been marked as 'OBSOLETE' in the Orphanet classification system, meaning it may have been reclassified, merged into a broader category of skeletal disorders, or redefined under a different name. Patients and families who have received this diagnosis should work with their medical team to determine the most current classification for their condition. Because the elbows are locked in a fixed position, affected individuals may have significant difficulty with everyday tasks such as feeding, dressing, and personal hygiene. Treatment is generally supportive and may include surgical intervention to attempt to restore some range of motion, physical therapy, and adaptive devices to help with daily activities. The rarity of this condition means that management is highly individualized, and outcomes depend on the severity of the fusion and whether other skeletal abnormalities are also present.
Also known as:
Key symptoms:
Inability to bend or straighten the elbowsFixed position of both armsLimited range of motion in the armsDifficulty with self-care tasks like eating and dressingAbnormal appearance of the elbow jointsPossible shortening of the forearmsDifficulty reaching the mouth or headReduced ability to carry objects
Variable
Can be inherited in different ways depending on the underlying gene
Neonatal
Begins at or shortly after birth (first 4 weeks)
Treatments
No FDA-approved treatments are currently listed for OBSOLETE: Humero-radial synostosis, bilateral.
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Specialists
View all specialists →No specialists are currently listed for OBSOLETE: Humero-radial synostosis, bilateral.
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 OBSOLETE: Humero-radial synostosis, bilateral.
Community
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Caregiver Resources
NORD Caregiver Resources
Support, advocacy, and financial assistance for caregivers of rare disease patients.
Mental Health Support
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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.Is this condition part of a broader genetic syndrome, or is it isolated?,Would genetic testing help us understand the cause or risk of recurrence in future children?,Is surgery an option to improve arm function, and what are the risks and expected outcomes?,What position should the arms be placed in if surgery is done to maximize daily function?,What types of occupational therapy and adaptive devices would be most helpful?,Are there other specialists we should see?,Has this diagnosis been reclassified, and what is the most current name for this condition?
Common questions about OBSOLETE: Humero-radial synostosis, bilateral
What is OBSOLETE: Humero-radial synostosis, bilateral?
Humero-radial synostosis, bilateral, is an extremely rare skeletal condition in which the humerus (the upper arm bone) and the radius (one of the two forearm bones) are fused together on both sides of the body. This fusion, called synostosis, means the elbow joint cannot move normally, severely limiting the ability to bend or straighten the arms. The condition is present from birth, as the bones fail to separate properly during fetal development. It is important to note that this entry has been marked as 'OBSOLETE' in the Orphanet classification system, meaning it may have been reclassified,
At what age does OBSOLETE: Humero-radial synostosis, bilateral typically begin?
Typical onset of OBSOLETE: Humero-radial synostosis, bilateral is neonatal. Age of onset can vary across affected individuals.