Living with VEXAS syndrome
A condition mainly in older adults, usually males, with recurring fevers, inflammation, and blood cell changes.
Understanding VEXAS syndrome
The innate immune system turns on when there is no injury or invader, causing fevers and inflammation in tissues and organs. It typically affects older adults, mainly males, starting in their fifties to seventies. Many have anemia, and some have low platelets or myelodysplastic syndrome.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Repeated fevers
- Joint pain and arthritis
- Ear and nose cartilage inflammation
- Skin inflammation
- Anemia with large red blood cells
- Blood clots in the deep veins
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 skin, hair, and nail 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); Skin, hair, and nail specialists (dermatologists)
- 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 Children's Skin Disease 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 doesn't describe a cause for this condition yet, beyond an immune response that is turned on abnormally.
Also known as: vacuoles, e1 enzyme, x-linked, autoinflammatory, somatic syndrome; vexas; vexas syndrome, somatic
Patient organizations
- Children's Skin Disease FoundationSkin diseases · United States
Broader rare-disease groups
- 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 VEXAS syndrome.
Explore research for VEXAS syndrome
Explore actively recruiting VEXAS syndrome studies with HealthSpark.
Find actively recruiting studies for VEXAS 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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