While skin cancer is a common problem for adults in the United States, a much more rare and special group of skin disorders was historically called “Ichthyosis”. This name is still used by many people and is the name of Ichthyosis Awareness Month! A newer term is starting to be used by researchers and doctors: Epidermal Differentiation Disorders (EDDs for short). The reason for the change is that EDDs better explains what is going on with the skin scientifically. It also moves away from the association with “fish scale” that ichthy- means. Right now, people who are living with these skin differences use the name that fits best for different scenarios and their preference.
A simple way to think about EDDs (or, ichthyoses) is that the skin of humans is supposed to be programmed to fall off in an orderly and regular way. But, sometimes the program has a mistake in it, and so the skin either falls off too easily or doesn’t fall off without some extra help. And sometimes, it is a little bit of both, so people with EDDs can have fragile areas of skin that are sensitive AND thick areas of skin that can be tight or itchy.
Some people with EDDs have problems only with their skin, some with sweating, and some people have other problems with their hearing or with allergies or other organs in their bodies.
But, what all kids who have these EDDs are is kids! Just like everyone else, they have fun, play, have their friends, activities and homework!
Some kids with skin problems go to AAD Camp Discovery. This Camp is a free camp for kids with lots of different kinds of skin problems, including atopic dermatitis (eczema), alopecia areata, birthmarks, epidermolysis bullosa or EDDs (ichthyosis). At camp, we all play and learn and enjoy together!
People with ichthyosis (EDDs) have a wonderful source of information, support and advocacy through FIRST (The Foundation for Ichthyosis and Related Skin Types) https://firstskinfoundation.org/
In June 2026, the FIRST 2026 National Conference will be in Minneapolis! Excited to see this great organization doing great work and coming to the great state of Minnesota!
