In this interview, Ally shares about her experiences growing up with Ichthyosis. Ally shares how: Meeting other kids with special skin can help kids to feel less isolated and give them a very special sense of comradery and understanding. Parents don’t have to do everything perfectly to be the perfect parent for their child and …
Ichthyosis
Blogs and REsources
Ichthyosis is a family of genetic skin disorders characterized by dry, thickened, scaly skin. The more than 20 types of ichthyosis range in severity of symptoms, outward appearance, underlying genetic cause and mode of inheritance (e.g., dominant, recessive, autosomal or X-linked).
3 ways I respond when people stare at my skin
To be honest, I have spent most of my life ignoring the comments and stares, but I have found that it is better to speak up. Speaking up helps that person learn something new and hopefully the next time he or she sees someone with something different about them, they will react a bit better.
How to explain Ichthyosis to children at different ages
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.
Meet Allie
“I would have given anything to know there were other kids like me. I was the only one and it was lonely.” Allie has epidermolytic ichthyosis and share how ACHFTS has helped her manage it.