Living with Exfoliative ichthyosis
An inherited skin condition with peeling skin on the palms and soles and dry, scaly skin, starting in infancy.
Understanding Exfoliative ichthyosis
It starts in infancy. The peeling gets worse with water and when skin is covered. Itching and decreased sweating may occur. Areas of skin can wear away in moist or injured areas. It affects only the skin.
Signs & symptoms
GARD describes these features in its summary:
- Peeling skin on the palms and soles
- Dry, scaly skin over most of the body
- Itching
- Decreased sweating (hypohidrosis)
- Skin that wears away in moist or injured areas
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 eye disease specialists, genetic specialists and 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
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- Eye disease specialists (ophthalmologists); 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 genes cause this condition. It is autosomal recessive, which means a child inherits a changed copy of the gene from each parent. GARD does not name the gene.
Also known as: autosomal recessive exfoliative ichthyosis; ichthyosis exfoliativa
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesExfoliative ichthyosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Exfoliative ichthyosis.
Explore research for Exfoliative ichthyosis
Explore actively recruiting Exfoliative ichthyosis 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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