Home » About Ichthyosis, or EDD

About Ichthyosis, or EDD

What is ichthyosis?

Ichthyosis, or Epidermal Differentiation Disorders (EDD), is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened and is often red. Each year, more than 16,000 babies are born with some form of ichthyosis, or EDD. A 2012 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.

Why are ichthyosis and related skin types now called EDDs?

In 2025, researchers announced a new way to classify ichthyosis and related conditions under a broader umbrella term: Epidermal Differentiation Disorders, or EDDs. This new naming system is based on genetics, which helps doctors to identify conditions more precisely and, through knowing the cause, opens doors to better, more targeted care.
While the names may look different on a chart or in a report, they describe the same lived experience.

Categories of EDDs include:

Formerly called “ichthyosis and related skin types”

n-EDDs (nonsyndromic EDDs) affects the skin only
s-EDDs (syndromic EDDs) involves the skin along with other body systems

Formerly called “palmoplantar keratodermas”

p-EDDs (palmoplantar EDDs) affects primarily the palms of the hands and soles of the feet

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 causes ichthyosis?
Most forms of ichthyosis are very rare. The genetic mutation that causes the disorder is passed from parent to child. In some cases however, neither parent exhibits the disorder themselves, but they are carriers of the defective gene. When two carriers pass their mutated gene on to a new life, the child will inherit the disorder. In some very rare cases, the genetic mutation occurs spontaneously in the affected generation.

What are some of the problems associated with ichthyosis?
Besides the common scaling condition of the skin and depending on the severity, there may be associated psychological symptoms due to the abnormal appearance of the skin. Ichthyosis is disfiguring for most affected individuals. In addition to the numerous medical complications like dehydration, infections, chronic blistering, overheating, and rapid-calorie loss, patients with ichthyosis are subjected to psychological issues. Patients are often ostracized and concerns of isolation, low self-esteem, and depression are common due to the appearance of their visible, chronically shedding skin.

What resources are available to help me?
FIRST offers a 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, tools and tips for living with ichthyosis, disease information and our quarterly newsletter, Ichthyosis Focus.

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, or EDD?
The following is a list of the more common ichthyoses and related skin types, and their historic names: