Posted by Les on July 25, 1999 at 01:32:56:
I have been online since January and have talked to numerous ichthyosis sufferers like myself.It seems everyone thinks they are the only ones, and when they find this site, they are amazed they can share their experiences with the world.I have become very frustrated with the level of research being done.We exchange our ideas on what best to use for each and every type of ichthyosis, but it seems that is not enough. I received a message from a father who has a 6 year old daughter, who was just diagnosed with ichthyosis, and wants to know what will cure her dry skin.As far as I know, only cremes and ointments like Lachydrin, Aqua Glycollic, salicyllic acid, uric acid, Neotigason, Soriatain, and Accutane are being used.I h ave not heard any info on Glylorin, so cant comment.The other night I was surfin on the net and went to Stanford Univ. Medical Center Dermotology Dept. There were over 200 articles from worldwide dermotology doctors and their experiments. They have isolated the enzyme that causes ichthyosis and are working on gene therapy on mice and are having good results.Sometimes I wish I were a mouse. Haha. But this is a good area to start on a cure and not blithering remedies.I hope soon they will have a cure for this awful disease. If you have any comments my e-mail address is lesthan@aol.com. bye for now.