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Foundation
Ichthyosis Fact Sheet

What Is Ichthyosis?

The ichthyoses are a family of genetic skin diseases characterized by dry, thickened, scaling skin. An ichthyosis patient’s skin’s natural shedding process is slowed or inhibited and, in some forms of ichthyosis, the production of skin cells is too rapid. Dermatologists estimate that there are at least twenty varieties of ichthyosis, with a wide range of severity and associated symptoms.

What Causes Ichthyosis?

Ichthyosis is not contagious. Ichthyosis is the result of a genetic mutation passed from parent to child. In some rare cases, the genetic mutation occurs spontaneously in the affected generation.

How Many People Have It?

Ichthyosis affects more than one million Americans. Ichthyosis comes in many forms and widely varying ranges of severity.

What Are The Symptoms Of Ichthyosis?

Ichthyosis is present at conception, though in some cases the symptoms do not become apparent until sometime during the first year of a child’s life. In other instances it is obvious at birth that something is wrong with the baby’s skin. Symptoms of ichthyosis range widely depending on the variety of ichthyosis involved. Some symptoms include: extremely dry skin; scaly skin; patches of dark scales; itchy skin; difficulty sweating; thinning hair; and protruded eyelids. Ichthyosis can be a disfiguring disease and as such, has numerous social and psychological implications.

How Is Ichthyosis Treated? Is There A Cure?

There is no cure for ichthyosis, only treatments to help manage the symptoms.

What Can I Do To Help?

Research on the genetics of ichthyosis and improved treatments is vitally needed. Education about ichthyosis is also needed. Because it is such a rare condition, many people, including doctors, simply do not know what it is. The Foundation for Ichthyosis & Related Skin Types (FIRST), a 501(c)(3) organization, was founded over 20 years ago and offers information, education, advocacy and support services to persons affected with ichthyosis and their families. In addition, FIRST serves as an important bridge between ichthyosis patients and the medical community. To receive more information about contributing to or becoming a member of FIRST, please call 215/619-0670 or www.scalyskin.org.

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