What is ichthyosis?
Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. The prefix "ichthy" is taken from the Greek root for the word fish. Each year, more than 16,000 babies are born with some form of ichthyosis. A recent study has determined that approximately 300 babies are born each year with a moderate to severe form of ichthyosis. Ichthyosis affects people of all ages, races and gender. The disease usually presents at birth, or within the first year, and continues to affect the patient throughout their lifetime.
Is there a cure for ichthyosis?
At present time there is no cure for ichthyosis, however dedicated researchers and physicians have and continue to develop effective ways to help manage the disorder. Parents are also playing an important role in sharing different treatments they are receiving with fellow parents of affected children and affected adults.
What resources are available to help me?
FIRST offers a vast library of information available to guide you on your journey to understanding ichthyosis and its implications. Ranging from a basic overview to an in-depth look at how ichthyosis is passed genetically, information for caregivers and teachers, our library includes booklets, resource sheets, disease sheets and our quarterly newsletter, Ichthyosis Focus. Our Regional Support Network is available to connect individuals with others in similar circumstances.
What can I do to help?
Please feel free to contact our office at 800.545.3286 or continue to navigate different sections on this website to find the information you need, or make a donation to help find a cure for ichthyosis.
What are the different types of ichthyosis and related skin disorders?
The following is a relatively complete list of the family-related ichthyosis diseases: