Posted by Lisa Wright on January 19, 1999 at 00:28:16:
In Reply to: icthyosis cie posted by Marg C on January 13, 1999 at 05:19:46:
I am 27 years old. I have Lamellar Ichthyosis. I have not been around anyone with this condition for many years. This has been my choice. I have wanted to be as normal as possible. It has only been in the past 2 years that I have been interested in finding out more about it. I met a newborn baby in our city that was born with Lamellar Icthiosis. I lead a very normal life. I am a 2nd grade teacher. I expect no special treatment except for special circumstances (recess duty on hot days). My school has been great to work with me.
Hang in there.
: I am in my 40s and was born with severe icthyosis with an elder sister sharing the same problem, younger sister with perfect skin. I live in North East Victoria Australia, and not until recently have gained an understanding of this problem. I have been taking the drug Neotigason for the past twelve months and this has made a radical change to my situation. The only part it hasn't improved is the tolerance to heat, this is a factor that is important to me as in the past weeks we have been experienceing 100f and over.For the first time in my life I only need a light moisturiser on my face and not have to rely on vaselene and other heavy based ointments such as eucerin. Apart from my sister I have not met anyone with a similar condition and would be interested in doing so. This site has been great and offers more information than I have been able to obtain, it also reinforces what I have experienced over the years, and lets me know that I am not alone.....Love to hear from anyone with the same
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