Living with Autosomal dominant vibratory urticaria
A rare condition in which vibration brings on itchy, red, swollen skin within minutes.
Understanding Autosomal dominant vibratory urticaria
The skin areas most exposed to the vibration, often the hands, are usually affected most. During an episode, people may also have flushing, headaches, fatigue, blurry vision, or a metallic taste in the mouth. Common triggers include mowing the lawn, riding a motorcycle, horseback riding, or mountain biking. It can start at any time in life.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Hives (urticaria)
- Flushing
- Redness of the cheeks (facial erythema)
- Itching and swelling of the skin
- Headaches during episodes
- Fatigue or a metallic taste during episodes
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 allergy and immune system specialists, genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in ADGRE2 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
Care & treatment
- Care team
- Allergy and immune system specialists (allergists / immunologists); Genetic specialists (geneticists); 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
It is caused by changes in the ADGRE2 gene. It appears to be inherited in an autosomal dominant way, so a change in one copy of the gene can cause it.
Also known as: ddu; dermodistortive urticaria; vbu; vibratory urticaria; vibratory urticaria, autosomal dominant
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 Autosomal dominant vibratory urticaria.
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