I actually have EHK but was diagnosed with CIE as a child. I am now 35 and have taken Soriatane since I was 17. I didn't start before then because my father (happens to be an orthopaedic surgeon) knew better. The drug can have an effect on the growth plates.
While I credit my standard of living to Soriatane I think that starting it should wait until the late teens or early twenties.
I hope this helps. [img]http://www.ichthyosis.com/ubb/smile.gif
[This message has been edited by Sarah Helen (edited May 29, 2007).]