Living with Pemphigus
A group of rare autoimmune conditions that blister the skin and the moist linings of the mouth, nose, and throat.
Understanding Pemphigus
Mucous membranes are the moist linings of the mouth, nose, throat, eyes, and genitals. Pemphigus can occur at any age but often starts in middle or older age. Different types, such as pemphigus vulgaris and pemphigus foliaceus, are more common in some regions than others.
Signs & symptoms
GARD doesn't list specific symptoms, but the summary describes:
- Blisters on the skin
- Blisters on the mouth, nose, throat, eyes, or genitals
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.
- 4Connect with expert centers
Autoimmune Association and International Pemphigus & Pemphigoid Foundation may keep lists of experts for this condition.
Care & treatment
- Care team
- A doctor familiar with rare conditions, plus specialists as needed
- Expert care
- Expert lists: Autoimmune Association, International Pemphigus & Pemphigoid 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 describes pemphigus as an autoimmune disease, which means the immune system attacks the body's own tissue.
Patient organizations
- Autoimmune AssociationPemphigus · United States
- International Pemphigus & Pemphigoid FoundationPemphigus · United States
You are more than your diagnosis
Perspectives from people navigating life with Pemphigus.
Explore research for Pemphigus
Explore actively recruiting Pemphigus studies with HealthSpark.
Find actively recruiting studies for Pemphigus 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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