Living with PFAPA syndrome
A childhood condition with repeating high fevers every few weeks, mouth sores, sore throat, and swollen neck glands.
Understanding PFAPA syndrome
Fevers last three to six days and come back every 21 to 28 days. The name stands for periodic fever, aphthous stomatitis (mouth sores), pharyngitis (sore throat), and adenitis (swollen neck lymph nodes). GARD says it happens by chance and is not inherited. It begins in infancy or childhood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated high fevers
- Mouth sores (canker sores)
- Sore throat
- Swollen neck lymph nodes
- Tiredness and irritability
- Headache, joint pain, or muscle aches
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.
- 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)
- 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 Jeffrey Modell 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 PFAPA is sporadic and non-hereditary, which means it happens by chance and is not passed down in families.
Also known as: marshall syndrome with periodic fever; periodic fever and aphthous stomatitis with pharyngitis and cervical lymphadenitis syndrome; periodic fever-aphtous stomatitis-pharyngitis-adenopathy; periodic fever-aphtous stomatitis-pharyngitis-adenopathy syndrome; periodic fever, aphthous stomatitis, pharyngitis and adenitis; periodic fever, aphthous stomatitis, pharyngitis, adenitis syndrome
Patient organizations
- Jeffrey Modell FoundationPFAPA syndrome · United States
You are more than your diagnosis
Perspectives from people navigating life with PFAPA syndrome.
Explore research for PFAPA syndrome
Explore actively recruiting PFAPA syndrome studies with HealthSpark.
Find actively recruiting studies for PFAPA 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting PFAPA syndrome studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for PFAPA syndrome
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your PFAPA syndrome experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.