Living with Paraneoplastic pemphigus
A rare autoimmune skin and mouth condition with painful blisters and sores, usually linked to a lymphoma or leukemia.
Understanding Paraneoplastic pemphigus
The immune system attacks the skin and moist linings of the body, causing many different kinds of skin changes. It generally goes along with a lymphoma or chronic lymphoid leukemia. It can occur at any age.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Blisters on the skin
- Blisters in the mouth
- Mouth sores (ulcers)
- Skin erosions
- Lymphoma (a cancer of immune cells)
- Thymoma (a tumor of the thymus gland)
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
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: 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 Global Autoimmune Institute 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 this condition is autoimmune, which means the immune system attacks the body's own tissue. It is generally linked to lymphoma or chronic lymphoid leukemia.
Patient organizations
- Global Autoimmune InstituteParaneoplastic pemphigus · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Paraneoplastic pemphigus.
Explore research for Paraneoplastic pemphigus
Explore actively recruiting Paraneoplastic pemphigus studies with HealthSpark.
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- Recruiting studies from ClinicalTrials.gov
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- 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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