Living with Radioulnar synostosis
A rare condition present from birth in which the two forearm bones are joined, limiting forearm rotation.
Understanding Radioulnar synostosis
It affects both arms in about 60% of cases. People often can't rotate the forearm well. Pain is usually not present until the teen years. There are two types, which differ in where the fusion is and whether the radial head is missing or dislocated. It can occur on its own or as part of some chromosome conditions or genetic syndromes.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fused forearm bones
- Limited forearm rotation (turning the palm up or down)
- Limited elbow movement
- Differences in the radius and ulna bones
- Dislocated radial head in some people
- Shoulder pain 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 RUS in Focus
- 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
It comes from abnormal development of the forearm bones before birth, and the cause isn't always known. It is sometimes part of a chromosome condition or genetic syndrome, and some cases appear to be inherited in an autosomal dominant way.
Also known as: congenital radioulnar synostosis; fused forearm bones; radioulnar fusion; radioulnar synostosis (disease)
Patient organizations
- RUS in FocusRadioulnar synostosis · United States
You are more than your diagnosis
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