Living with Adult-onset Still disease
An inflammatory condition that affects many organs, with high fevers, rash, and joint pain.
Understanding Adult-onset Still disease
Symptoms can include an enlarged spleen and lymph nodes and a sore throat. In some cases, symptoms may be severe and lead to organ and joint damage. Diagnosis is based on symptoms and several blood tests. Other, more common conditions have to be ruled out first. GARD lists the onset as adulthood and older adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- High fevers
- Skin rash
- Arthritis (swollen, painful joints)
- High level of ferritin, an iron-storing protein
- Enlarged spleen and lymph nodes
- Sore throat
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 kidney specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Kidney specialists (nephrologists)
- Expert care
- Expert lists: Global Autoimmune Institute
- 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 Global Autoimmune Institute 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 the cause of AOSD is unknown, but genetic and other unknown factors may be involved.
Also known as: adult onset still disease; adult onset still's disease; adult-onset still's disease; aosd; wissler-fanconi syndrome
Patient organizations
- Global Autoimmune InstituteAdult-onset Still disease · United States
- Arthritis FoundationAdult-onset Still disease · United States
- The International Foundation for Autoimmune & Autoinflammatory ArthritisAdult-onset Still disease · United States
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Adult-onset Still disease.
Explore research for Adult-onset Still disease
Explore actively recruiting Adult-onset Still disease studies with HealthSpark.
Find actively recruiting studies for Adult-onset Still disease 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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