Living with Medial condensing osteitis of the clavicle
A rare, benign bone condition of the collarbone that causes swelling and lasting shoulder pain.
Understanding Medial condensing osteitis of the clavicle
It is benign (not cancer) and usually affects one side. People notice local swelling and ongoing pain. X-rays show the inner end of the collarbone has widened and looks denser. It can begin from childhood to adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Shoulder pain
- Swelling near the collarbone
- Abnormal collarbone shape
- Patchy reduction of bone density
- Limited shoulder 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 autoimmune and inflammatory disease specialists and bone and joint specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Bone and joint specialists (orthopedists or orthopedic surgeons)
- 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
GARD doesn't describe a cause for this condition yet.
Also known as: condensing osteitis of the clavicle; condensing osteitis of the medial clavicle; medial condensing osteitis of clavicle; osteitis condensans of medial clavicle; osteitis condensans of the clavicle
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 Medial condensing osteitis of the clavicle.
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