Highlights from the first major survey of people with ichthyosis
and related skin types
Ichthyosis is a group of skin disorders that cause dry, scaly skin. There are over 25 types, and most are caused by genetic abnormalities. There is no cure and no treatments have been approved by the U.S. Food and Drug Administration (FDA) specifically for ichthyosis. Some products and skin care regimens can help, but most patients experience symptoms for their entire lives.
For 45 years, FIRST has provided trustworthy and compassionate support, reliable information, and useful resources as part of its mission to improve lives and seek cures for those affected by ichthyosis and related skin types. To support these efforts, FIRST conducted a survey of the ichthyosis community in 2025, representing the first major effort to elicit patient and caregiver perspectives on living with this group of disorders.
By bringing to light the challenges of living with ichthyosis, sources of strength and hope within the patient community, and critical gaps and unmet needs, the survey results can guide strategies to help more patients with these skin conditions thrive.
About the survey
The 42-question survey was conducted online in 2025. A total of 177 responses were received, with an average of 154 responses per question. About 7 in 10 respondents indicated they have ichthyosis or a related skin condition, while the rest were parents or guardians of children with the condition. Many ichthyosis types were represented among respondents; a breakdown of subgroups by type is provided in the full report.
Life with ichthyosis
Living with ichthyosis can affect all life domains. These conditions aren’t just physical or skin deep, but can take an emotional, mental and social toll too depending on severity and other factors.
