Living with Takayasu arteritis
An autoimmune condition that inflames the aorta and its branches, narrowing blood vessels and reducing blood flow.
Understanding Takayasu arteritis
Inflammation thickens the vessel walls and makes it hard for blood to flow. Over time this can damage the heart and other organs. It appears to be autoimmune, meaning the immune system targets the body's own tissues. It usually begins in the teen years or adulthood.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Fever and tiredness
- Headache
- Chest pain
- Weak or absent pulse
- Different blood pressure in the two arms
- High blood pressure
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, heart and blood vessel specialists, kidney specialists and lung and breathing specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
Autoimmune Association, Immune Deficiency Foundation and Vasculitis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Heart and blood vessel specialists (cardiologists); Kidney specialists (nephrologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Autoimmune Association, Immune Deficiency Foundation, Vasculitis 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 Autoimmune Association 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 is unknown, but it appears to be autoimmune.
Also known as: acquired aortoarteritis; aortic arch arteritis; aortic arch syndrome; arteritis, takayasu; atypical coarctation; cervical aortic arch
Patient organizations
- Autoimmune AssociationTakayasu arteritis · United States
- Immune Deficiency FoundationTakayasu arteritis · United States
- Vasculitis FoundationTakayasu arteritis · United States
- The Lauren Currie Twilight FoundationTakayasu arteritis · National Kidney Foundation
- Renal Support NetworkKidney diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Takayasu arteritis.
Explore research for Takayasu arteritis
Explore actively recruiting Takayasu arteritis studies with HealthSpark.
Find actively recruiting studies for Takayasu arteritis 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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