Living with Ichthyosis
A group of skin conditions that cause visible scaling and thickened skin over most of the body.
Understanding Ichthyosis
Inherited forms are caused by changes in many different genes that help skin cells mature and keep the skin barrier working. Ichthyosis can also be acquired later in life with certain autoimmune, inflammatory, metabolic, hormone, or infectious diseases, or with some cancers.
Signs & symptoms
GARD doesn't list specific symptoms for this condition yet. Its summary describes:
- Visible scaling of the skin
- Thickened skin (hyperkeratosis)
- Changes that cover most or all of the skin
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
Foundation for Ichthyosis and Related Skin Types may keep lists of experts for this condition.
Care & treatment
- Care team
- 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
Inherited forms are caused by changes in various genes important for skin cell development and the skin barrier. Acquired forms can be seen with certain autoimmune, inflammatory, metabolic, hormone, or infectious diseases, or with cancers.
Also known as: disorder of cornification; doc; fish scale disease; fish skin disease; hypertrophic ichthyosis; ichthyoses
Patient organizations
- Foundation for Ichthyosis and Related Skin TypesIchthyosis · United States
- Children's Skin Disease FoundationSkin diseases · United States
You are more than your diagnosis
Perspectives from people navigating life with Ichthyosis.
Explore research for Ichthyosis
Explore actively recruiting Ichthyosis studies with HealthSpark.
Find actively recruiting studies for Ichthyosis 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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