FIRST Patient Voice Survey Finds Rare Skin Disease Takes Toll Far Beyond the Skin
Nine in 10 respondents report emotional toll, while survey findings point to social isolation, burdensome care routines, difficulty finding knowledgeable doctors, and urgent need for new treatments
The Foundation for Ichthyosis & Related Skin Types (FIRST) today announced results from its Patient Voice Survey showing that nine in 10 people affected by ichthyosis and related skin types reported emotional or psychological impacts from their condition. The first major survey of people and family members affected by these rare genetic skin disorders captures the lived experiences of patients and caregivers and shows how ichthyosis can affect daily routines, social relationships, access to care, treatment burden, and hopes for better therapies.
Ichthyosis is a family of rare, genetic skin diseases characterized by dry, cracked, scaling skin that may be thickened or very thin. At least 300 babies are born each year with a moderate to severe form of ichthyosis. There is currently no cure, and no treatments have been approved by the U.S. Food and Drug Administration specifically for ichthyosis.
The Patient Voice Survey was designed to move beyond clinical descriptions of ichthyosis and better understand how the condition affects daily life, family routines, access to care, emotional well-being, and hopes for better treatments.
