Living with Reye syndrome
A sudden metabolic condition, mainly in children, that causes brain swelling, a fatty liver, and low blood sugar.
Understanding Reye syndrome
It occurs mainly in children. It has been linked to the use of aspirin to treat viral infections, but it can also happen without aspirin. GARD lists the onset as a variety of ages.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes these:
- Swelling in the brain (cerebral edema)
- Fatty liver
- Low blood sugar (hypoglycemia)
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 rare disease patient organizations for support
- 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 it has been linked to aspirin use during viral infections, but it can also occur without aspirin. It does not list a gene.
Also known as: fatty liver with encephalopathy; reye's encephalopathy; reye's syndrome
Patient organizations
Rare-disease groups that can help
- 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 Reye syndrome.
Explore research for Reye syndrome
Explore actively recruiting Reye syndrome studies with HealthSpark.
Find actively recruiting studies for Reye 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
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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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