Living with Humeroulnar synostosis
A rare condition of the elbow in which a bony connection locks the forearm in a bent position.
Understanding Humeroulnar synostosis
The bony connection holds the forearm bent, usually near 90 degrees. It may occur with underdeveloped upper limbs. It can occur on one or both sides and may be sporadic or run in families.
Signs & symptoms
GARD doesn't list specific symptoms for this condition. Its summary describes:
- Forearm fixed in a bent position
- Bone connection at the elbow
- Underdeveloped upper limb in some people
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. It may be sporadic (happening by chance) or run in families.
Also known as: humeral ulnar synostosis; humero-ulnar fusion; humero-ulnar synostosis
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 Humeroulnar synostosis.
Explore research for Humeroulnar synostosis
Explore actively recruiting Humeroulnar synostosis studies with HealthSpark.
Find actively recruiting studies for Humeroulnar synostosis with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
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- 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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