I could write a book for this one!
I'm 28, have Lamellar Icthyosis all over. I don't know if all people with Lamellar have it all over like I do or if it's possible to have in patches, but I'd be interested in knowing.
Childhood in a nutshell was hell. I wnt through a lot of teasing, many illnesses, and had a parent that had a lot of problems coping. I was raised by a single parent who was very vocal about fears and thoughts that I was ugly, no one would ever love me, I was going to die young, etc. I grew up thinking the same things. After I left home for college, a whole new world opened up for me. I got my degree, was able to make my own decisions about what doctors to see and how to take care of my skin. My skin improved drastically, I got a lot of counseling, and I made a lot of friends.
I met my husband about a year after I was out of college. He's helped me increase my self confidence a lot, and while I have a hard time believing him when he says I'm beautiful, it makes me feel better about myself when he says it.
I've learned to become more vocal when seeing doctors. I've tried a lot of different things for my skin and unfortunately there isn't a whole lot that works for me in terms of lotions and creams. But I have learned that outside of making sure I moisturize my skin frequently with products that work for me, the best thing that helps my skin and the rest of me is to be with people I enjoy, laugh a lot, make sure that the job I perform is one I enjoy, and to appreciate what I have got. I have learned that I cannot let my skin dictate who I am and how I live my life. While it is a part of me, it is not all of me.
My husband is a fantastic man, and very supportive. We have 3 "kids" two dogs and a cat. I have a lovely job that keeps me interested every day and the people I work with are great. It took me a long time to be where I'm at today and I wouldn't trade it for anything. For any kids with ichthyosis, no matter how hard it may seem being around other kids, there are people out there who care about you, even if you don't know it at the time, and things will improve as you get older.
While it may seem kind of funny, the stuff that I have learned is relevant for anyone, not just someone with ichthyosis.
[This message has been edited by Chandra (edited November 20, 2000).]
I am female, and was born in 1972 with Lamellar Ichthyosis.