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Hello,
Ichthyosis is a fairly rare, genetic disorder that presents as a different type of skin, usually dry and flaky. There are approximately 27 different types, with varying degrees of severity.
I have a type called EI and our family adopted a slightly older child from Eastern Europe with ARCI. Others are fascinated that my son and I both have Ichthyosis but they don't understand what it means that we have different types. Even family and friends that have known me all my life ask me how we are different, yet the same.
As far as my son knows (he is 4) both Mummy and he have special skin.
Within the adoption community others are intrigued by this situation. I have also discovered other APs with kids that have ichthyosis. I've discovered that there are unique challenges to parenting in this situation.
Any others with me?
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Hello,daily skin care runs from long soaks/showers to using lots of creams and lotions to combing the thick scales out of hair etc etc.The challenges, for the most part, are dealing with the painful cracking, blisters and infections. The other challenge is the social aspect of looking different. Part of the challenge for DS and I has been that he was very isolated and protected from stares and rudely asked questions. We look different, with fragile, thin or extra thick skin and scaling. He has not only been learning a new culture, language and family rules but how to respond to folks in public.There is no cure as it is genetic.