About Congenital Ichthyosis

Congenital ichthyosis (CI) is a group of rare genetic keratinization disorders that leads to dry, thickened, and scaling skin. People living with CI may have limited range of motion, chronic itching, an inability to sweat normally, high risk of secondary infections, and impaired eyesight or hearing. The management of CI is a life-long endeavor, which remains largely symptomatic and commonly focused on reducing scaling and/or skin lubrication with both systemic and topical treatments.

Most cases of ichthyosis are inherited, but some types develop in association with genetic syndromes or diseases. The CONTROL Study is focused on moderate to severe subtypes - lamellar ichthyosis and X-linked ichthyosis - that affect about 80,000 people in the U.S. X-linked ichthyosis only affects males and causes brownish scales on the back of the neck, back and legs. People with lamellar ichthyosis have dark, plate-like scales with cracks that cover most of their body.

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More information

Additional information and support can be provided by the organizations listed below:


Foundation for Ichthyosis and Related Skin Types

National Organization for Rare Disorders