Living with Cryopyrin associated periodic syndrome
A group of inflammatory conditions with repeated attacks of inflammation that are not caused by infection.
Understanding Cryopyrin associated periodic syndrome
CAPS includes three conditions on a range of severity: severe CINCA syndrome, intermediate Muckle-Wells syndrome, and milder familial cold urticaria. It can show up at a variety of ages.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary mentions repeated attacks of body-wide inflammation.
- Repeated attacks of inflammation
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, allergy and immune system specialists, genetic 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.
- 4Connect with expert centers
Immune Deficiency Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Immune Deficiency Foundation
- 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 The International Foundation for Autoimmune & Autoinflammatory Arthritis and other patient organizations
- 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 changes in genes cause this condition. It is autosomal dominant, meaning one changed copy of the gene can be enough to cause it. GARD doesn't name a gene.
Also known as: caps; cryopyrin-associated periodic syndrome; cryopyrinopathy; nlrp3-associated systemic autoinflammatory disease
Patient organizations
- The International Foundation for Autoimmune & Autoinflammatory ArthritisCryopyrin associated periodic syndrome · United States
- Immune Deficiency FoundationPrimary immunodeficiency · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Cryopyrin associated periodic syndrome.
Explore research for Cryopyrin associated periodic syndrome
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