Living with Pyogenic arthritis-pyoderma gangrenosum-acne syndrome
A rare inherited inflammatory condition of childhood that mainly affects the joints and skin.
Understanding Pyogenic arthritis-pyoderma gangrenosum-acne syndrome
It causes joint swelling (arthritis), skin ulcers, and severe acne. It starts in childhood, and GARD says it can affect more than one part of the body.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Joint swelling and pain (arthritis)
- Limited joint movement
- Skin ulcers
- Acne and pustules
- Fever and tiredness
- Swollen lymph nodes
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, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in PSTPIP1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Genetic specialists (geneticists); 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
This condition is caused by changes in the PSTPIP1 gene. It is autosomal dominant, meaning one changed copy of the gene is enough.
Also known as: familial recurrent arthritis; fra; papa; papa (pyogenic arthritis, pyoderma gangrenosum, acne) syndrome; papa syndrome; pyogenic arthritis, pyoderma gangrenosum, acne 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 Pyogenic arthritis-pyoderma gangrenosum-acne syndrome.
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