How to explain Ichthyosis to children at different ages

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May is Ichthyosis Awareness Month.

“Ichthyosis is a family of genetic skin disorders characterized by dry, scaling skin that may be thickened or very thin. 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.” (Source: First Skin Foundation)

When your child is diagnosed with Ichthyosis, you’ll likely need to explain the disease to not only your child as they grow up but also siblings, cousins, friends, and acquaintances. We’d like to break down some examples of age appropriate ways to explain Ichthyosis.

Preschoolers

A person who has ichthyosis was born a bit different and has skin that is very very dry. While medicines and lotions can help their skin, it cannot make their ichthyosis go away. Skin with ichthyosis can be very sensitive, which means it needs to be treated gently.  You cannot catch ichthyosis from another person.

One way you can be a good friend to someone with ichthyosis is to wash your own hands regularly to keep from spreading germs near their sensitive skin.

School Age

There are different types of ichthyosis, but in general, it means that a person has very dry skin that is either very thick or very thin. It is not contagious; you cannot catch it. It is something that a person is born with.  This means it is safe to sit by, or hug, or high five someone with ichthyosis.

All of our skin gets new skin cells all of the time. Our old skin cells die and get brushed off and go away and new skin cells come to the top. In most types of skin this happens so quickly you can’t really see it. In skin with ichthyosis, it happens at a different pace so those dead cells can be more easily seen.  Ichthyosis can sometimes cause skin to break more easily and can make skin more sensitive and more tender. This is why many times people with ichthyosis might choose to wear long sleeves or long pants to help protect their skin while they work and play.

Even though a person with ichthyosis might look red, does not mean that their skin is hurting (or have a sunburn) and even though their skin might look brown or flaky does not mean they are dirty. It is just one of the ways that their skin looks and acts differently from skin that does not have ichthyosis.

Teenagers

There are many different types of ichthyosis, but in general they are genetic conditions that impact the skin. This means that both the mother and father of a person born with ichthyosis were carriers of the gene. There are different types of ichthyosis, but in general, it means that a person has very dry skin that is either very thick (in some areas) or very thin (in others).

Our skin is our body’s largest organ and has very important jobs in our health such as protecting us from germs and regulating our internal temperature. People who have ichthyosis have to take special precautions and overcome challenges to protect their bodies from infection and overheating. There is no cure for ichthyosis but treatment includes keeping skin very well hydrated through ointments, medications and soaks.

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