Living with TNF receptor-associated periodic fever syndrome (TRAPS)
An inherited condition with repeating fevers that last days to weeks, often with belly pain, muscle pain, and rash.
Understanding TNF receptor-associated periodic fever syndrome (TRAPS)
Fevers usually last about 3 weeks but can last from a few days to a few months, and can come from every 6 weeks to every few years. Triggers can include minor injury, infection, stress, exercise, or hormone changes. Some people develop amyloidosis, a protein buildup in the kidneys, typically in mid-adulthood. Most have a first episode in childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated fevers
- Belly pain
- Muscle pain (myalgia)
- Skin rash, often on the limbs
- Joint pain or arthritis
- Swelling around the eyes (periorbital edema)
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.
- 3Consider genetic testing
Changes in TNFRSF1A are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 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 Jeffrey Modell Foundation 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
This condition is caused by changes in the TNFRSF1A gene. It is autosomal dominant, which means one changed copy of the gene can be enough to cause it.
Also known as: autosomal dominant familial periodic fever; familial autosomal dominant periodic fever; familial hibernian fever; fhf; fpf; hibernian fever, familial
Patient organizations
- Jeffrey Modell FoundationTNF receptor-associated periodic fever syndrome (TRAPS) · 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 TNF receptor-associated periodic fever syndrome (TRAPS).
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