Living with Humeroradial synostosis
A rare genetic condition present at birth in which the upper arm bone and a forearm bone fuse at the elbow.
Understanding Humeroradial synostosis
It can affect one or both arms. Some people also have differences in the ulna or in wrist and hand bones. It leads to loss of elbow motion, and in many people the arm does not work as well. The radius may bow. It may be seen during pregnancy or in newborns.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Stiff, fixed elbow (elbow ankylosis)
- Elbow dislocation
- Limited joint movement
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
Specialists who may be involved include bone and joint specialists and genetic specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- Bone and joint specialists (orthopedists or orthopedic surgeons); Genetic specialists (geneticists)
- Expert care
- Ask about multidisciplinary care centers for rare conditions
- 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 rare disease patient organizations for support
- 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
Changes in genes (also called variants) cause this condition. GARD lists autosomal dominant and autosomal recessive inheritance.
Also known as: fusion of upper and lower arm bones; humeral radial synostosis; humeral-radial synostosis; humero-radial fusion; humero-radial synostosis; humeroradial synostosis (disease)
Patient organizations
Rare-disease groups that can help
- Global GenesRare Diseases · United States
- National Organization for Rare DisordersRare Diseases · United States
- Genetic AllianceRare Diseases · United States
- RARE FoundationRare Diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Humeroradial synostosis.
Explore research for Humeroradial synostosis
Explore actively recruiting Humeroradial synostosis studies with HealthSpark.
Find actively recruiting studies for Humeroradial synostosis 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
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Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
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