Living with Familial benign pemphigus
A rare inherited skin condition (Hailey-Hailey disease) with red, raw, blistered skin in skin folds.
Understanding Familial benign pemphigus
Red, raw, blistered areas appear most often in skin folds, such as the groin, armpits, neck, and under the breasts. They can become crusty or scaly and itch and burn. They tend to get worse with sweat, friction, and hot weather. Skin may get infected, causing pain and odor. Many people have white lines along their fingernails.
Signs & symptoms
Symptoms vary from person to person. GARD lists these among the most common:
- Red, raw, blistered skin
- Skin erosions
- Crusty or scaly patches
- Itching and burning
- Thickened skin
- White lines along the fingernails
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 genetic specialists and skin, hair, and nail specialists.
- 3Consider genetic testing
Changes in ATP2C1 are linked to this condition. Genetic testing and counseling can help confirm a diagnosis and explain what it means for your family.
- 4Connect with expert centers
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Genetic specialists (geneticists); Skin, hair, and nail specialists (dermatologists)
- Expert care
- Expert lists: Foundation for Ichthyosis and Related Skin Types
- 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 Foundation for Ichthyosis and Related Skin Types 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
Changes in the ATP2C1 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: benign chronic familial pemphigus of hailey-hailey; benign chronic pemphigus; benign familial chronic pemphigus; familial benign chronic pemphigus; hailey hailey disease; hailey-hailey disease
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesFamilial benign pemphigus · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Familial benign pemphigus.
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