Overview
Isolated sternocostoclavicular hyperostosis (SCCH) is a rare bone disorder characterized by excessive bone growth (hyperostosis) and ossification affecting the sternum (breastbone), clavicles (collarbones), and upper ribs, along with the joints connecting these structures. The condition leads to progressive thickening and sclerosis of these bones, often resulting in pain, swelling, and restricted movement in the upper chest and shoulder region. It is sometimes referred to as sternocostoclavicular hyperostosis or pustulotic arthro-osteitis when associated with skin manifestations, though the isolated form occurs without accompanying dermatological conditions such as palmoplantar pustulosis. The disease primarily affects the musculoskeletal system, particularly the anterior chest wall. Patients typically present with chronic pain and tenderness over the sternoclavicular joints, visible swelling or bony enlargement of the upper chest, and limited range of motion of the shoulders. Imaging studies such as CT scans or bone scintigraphy reveal characteristic hyperostotic changes including cortical thickening, sclerosis, and sometimes ossification of the costoclavicular ligaments. The condition may be unilateral or bilateral and tends to follow a chronic, relapsing course. Treatment is primarily symptomatic and aimed at managing pain and inflammation. Nonsteroidal anti-inflammatory drugs (NSAIDs) are commonly used as first-line therapy. In refractory cases, corticosteroids, bisphosphonates, or other anti-inflammatory agents may be considered. Physical therapy can help maintain mobility. The condition is generally benign but can significantly impact quality of life due to chronic pain and functional limitations. The exact etiology remains unclear, and it is considered part of the broader spectrum of synovitis, acne, pustulosis, hyperostosis, and osteitis (SAPHO) syndrome, though the isolated form lacks the other features of SAPHO.
Also known as:
Adult
Begins in adulthood (age 18 or older)
Treatments
No FDA-approved treatments are currently listed for Isolated sternocostoclavicular hyperostosis.
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Specialists
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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 Isolated sternocostoclavicular hyperostosis.
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Common questions about Isolated sternocostoclavicular hyperostosis
What is Isolated sternocostoclavicular hyperostosis?
Isolated sternocostoclavicular hyperostosis (SCCH) is a rare bone disorder characterized by excessive bone growth (hyperostosis) and ossification affecting the sternum (breastbone), clavicles (collarbones), and upper ribs, along with the joints connecting these structures. The condition leads to progressive thickening and sclerosis of these bones, often resulting in pain, swelling, and restricted movement in the upper chest and shoulder region. It is sometimes referred to as sternocostoclavicular hyperostosis or pustulotic arthro-osteitis when associated with skin manifestations, though the is
At what age does Isolated sternocostoclavicular hyperostosis typically begin?
Typical onset of Isolated sternocostoclavicular hyperostosis is adult. Age of onset can vary across affected individuals.