Living with SAPHO syndrome
An inflammatory condition combining joint, skin, and bone problems such as acne, pus-filled blisters, and bone overgrowth.
Understanding SAPHO syndrome
The name stands for synovitis, acne, pustulosis (often on the palms and soles), hyperostosis, and osteitis. People may have any combination of these. It can occur at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Joint pain and arthritis
- Acne
- Pus-filled blisters on palms and soles
- Bone pain
- Bone overgrowth (hyperostosis)
- Chest pain
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 skin, hair, and nail 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); Skin, hair, and nail specialists (dermatologists)
- 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 Children's Skin Disease Foundation
- 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 says the cause of SAPHO syndrome is unknown.
Also known as: acquired hyperostosis syndrome; pphs; pustulo-psoriatic hyperostotic spondyloarthritis; sapho - synovitis, acne, pustulosis palmaris, hyperostosis, osteomyelitis syndrome; synovitis acne pustulosis hyperostosis osteomyelitis syndrome; synovitis-acne-pustulosis-hyperostosis-osteitis syndrome
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- 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 SAPHO syndrome.
Explore research for SAPHO syndrome
Explore actively recruiting SAPHO syndrome studies with HealthSpark.
Find actively recruiting studies for SAPHO syndrome with HealthSpark. Share your city to explore research near you.
- Recruiting studies from ClinicalTrials.gov
- Share your city to look for research near you
- 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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