Living with Vibratory angioedema
A rare form of hives in which vibration triggers swelling of the skin or lining of the mouth and throat.
Understanding Vibratory angioedema
It can be inherited or occur without a family history. Swelling is usually in one spot and lasts hours to days. It may first be itchy, then painful, and the skin may look normal or red. It can affect the skin and the lining of the mouth and throat.
Signs & symptoms
GARD doesn't list a common-symptom list, but its summary describes these:
- Swelling in one area
- Itching at first
- Pain
- Redness or normal-looking skin
- Swelling that lasts hours to days
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
Your doctor may refer you to a specialist who knows rare conditions.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- 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 swelling is triggered by vibration. It says the condition can be inherited or occur without a family history, and doesn't name a gene.
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 Vibratory angioedema.
Explore research for Vibratory angioedema
Explore actively recruiting Vibratory angioedema studies with HealthSpark.
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- 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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