Living with Pemphigus vulgaris
An autoimmune condition with blisters and sores on the skin and in the mouth, mostly in middle-aged and older adults.
Understanding Pemphigus vulgaris
It occurs almost only in middle-aged or older people. Soft blisters filled with clear fluid appear on healthy or irritated skin. Many cases begin with mouth blisters, followed by skin blisters that may come and go. Mouth blisters can make eating hard, and broken skin blisters can be painful. Infections can be serious.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blisters on the skin
- Blisters and sores in the mouth
- Trouble eating
- Weight loss
- Skin infections or abscesses
- Anxiety or depression
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 skin, hair, and nail specialists.
- 3Ask which tests can help
Your care team will decide which exams and tests can confirm the diagnosis.
- 4Connect with expert centers
International Pemphigus & Pemphigoid Foundation and Global Autoimmune Institute may keep lists of experts for this condition.
Care & treatment
- Care team
- Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: International Pemphigus & Pemphigoid Foundation, Global Autoimmune Institute
- 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 International Pemphigus & Pemphigoid Foundation 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 exact cause is unknown. The blisters are linked to antibodies binding to skin cells. GARD lists it as autosomal dominant.
Also known as: familial pemphigus vulgaris; pv - pemphigus vulgaris
Patient organizations
- International Pemphigus & Pemphigoid FoundationPemphigus vulgaris · United States
- Global Autoimmune InstitutePemphigus vulgaris · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Pemphigus vulgaris.
Explore research for Pemphigus vulgaris
Explore actively recruiting Pemphigus vulgaris studies with HealthSpark.
Find actively recruiting studies for Pemphigus vulgaris 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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