Isolated sternocostoclavicular hyperostosis

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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.

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Age of Onset

Adult

Begins in adulthood (age 18 or older)

Orphanet ↗NORD ↗

Treatments

No FDA-approved treatments are currently listed for Isolated sternocostoclavicular hyperostosis.

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No actively recruiting trials found for Isolated sternocostoclavicular hyperostosis at this time.

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No specialists are currently listed for Isolated sternocostoclavicular hyperostosis.

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Treatment Centers

8 centers
🏥 NORD

Baylor College of Medicine Rare Disease Center

Baylor College of Medicine

📍 Houston, TX

🏥 NORD

Stanford Medicine Rare Disease Center

Stanford Medicine

📍 Stanford, CA

🔬 UDN

NIH Clinical Center Undiagnosed Diseases Program

National Institutes of Health

📍 Bethesda, MD

🔬 UDN

UCLA UDN Clinical Site

UCLA Health

📍 Los Angeles, CA

🔬 UDN

Baylor College of Medicine UDN Clinical Site

Baylor College of Medicine

📍 Houston, TX

🔬 UDN

Harvard/MGH UDN Clinical Site

Massachusetts General Hospital

📍 Boston, MA

🏥 NORD

Mayo Clinic Center for Individualized Medicine

Mayo Clinic

📍 Rochester, MN

👤 Mayo Clinic Center for Individualized Medicine

🏥 NORD

UCLA 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.