Living with Epidermolytic palmoplantar keratoderma, 1
A rare genetic skin condition that thickens the skin on the palms of the hands and soles of the feet.
Understanding Epidermolytic palmoplantar keratoderma, 1
The outer layer of skin on the palms and soles becomes abnormally thick (hyperkeratosis). The thick skin can feel hard, rough, or uncomfortable.
Signs & symptoms
GARD describes this feature in its summary:
- Thick, hard skin on the palms and soles
- Rough skin that can be uncomfortable
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 KRT9 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 KRT9 gene cause this condition. It is autosomal dominant, which means a change in one copy of the gene can cause it.
Also known as: diffuse erythrodermic palmoplantar keratoderma, voerner type; diffuse erythrodermic palmoplantar keratoderma, vörner type; epidermolytic palmoplantar keratoderma of voerner; epidermolytic palmoplantar keratoderma of vörner; eppk; eppk1
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesEpidermolytic palmoplantar keratoderma, 1 · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Epidermolytic palmoplantar keratoderma, 1.
Explore research for Epidermolytic palmoplantar keratoderma, 1
Explore actively recruiting Epidermolytic palmoplantar keratoderma, 1 studies with HealthSpark.
Find actively recruiting studies for Epidermolytic palmoplantar keratoderma, 1 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
Powered by HealthSpark, our AI chat helper
I can help you find recruiting Epidermolytic palmoplantar keratoderma, 1 studies. Enter a ZIP code, address or city below and I'll look within 50 miles.
Powered by HealthSpark, our AI chat helper · Study information from ClinicalTrials.gov · Eligibility is confirmed by the study team.
Get Signals for Epidermolytic palmoplantar keratoderma, 1
Stay in the loop with community stories and updates from medical researchers.
Create a living journal that talks back
HealthStory evolves private journaling with a living AI journal that talks back and asks thoughtful questions, helping you capture your Epidermolytic palmoplantar keratoderma, 1 experiences more deeply and prepare for better conversations with your doctors and care team.
Your journal is private. Sharing your story publicly is a separate choice, made with Share your story above.