Living with Granulomatosis with polyangiitis
A condition formerly called Wegener granulomatosis, with inflamed blood vessels that mainly affect the lungs, airways, nose, sinuses, and kidneys.
Understanding Granulomatosis with polyangiitis
It is marked by vasculitis, inflammation of blood vessels, especially small and medium vessels in the lungs, nose, sinuses, windpipe, and kidneys. Vasculitis scars the vessels and slows blood flow to tissues. Granulomas, small areas of inflammation made of immune cells, usually form in the lungs or airways. Severe nose inflammation can create a hole in the nasal septum or a sunken bridge of the nose (saddle nose). It can start at a variety of ages.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Nasal congestion and frequent nosebleeds
- Shortness of breath or cough
- Blood in the urine
- Joint pain or arthritis
- Belly pain
- Chest pain
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, brain and nervous system 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, Global Autoimmune Institute and Vasculitis Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- autoimmune and inflammatory disease specialists (rheumatologists); Brain and nervous system specialists (neurologists); Kidney specialists (nephrologists); Lung and breathing specialists (pulmonologists)
- Expert care
- Expert lists: Autoimmune Association, Global Autoimmune Institute, 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 doesn't describe a cause for this condition yet.
Also known as: gpa; necrotizing respiratory granulomatosis; pauci-immune glomerulonephritis associated with granulomatosis with polyangiitis; wegener's syndrome
Patient organizations
- Autoimmune AssociationGranulomatosis with polyangiitis · United States
- Global Autoimmune InstituteGranulomatosis with polyangiitis · United States
- Vasculitis FoundationGranulomatosis with polyangiitis · United States
- The Lauren Currie Twilight FoundationGranulomatosis with polyangiitis · Epilepsy Foundation
- National Kidney FoundationKidney diseases · United States
- Renal Support NetworkKidney diseases · United States
- The Foundation for Peripheral NeuropathyPeripheral neuropathy · United States
- Neuropathy Action FoundationPeripheral neuropathy · United States
You are more than your diagnosis
Perspectives from people navigating life with Granulomatosis with polyangiitis.
Explore research for Granulomatosis with polyangiitis
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