Re: Ichthyosis information

Posted by Sharon on November 03, 1999 at 23:03:05:

In Reply to: Ichthyosis information 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.

Les,
My daughter was born with congenital lamellar icthyosis and she is now 18 yrs old. She is a different sort because she has the more rare side effect of bilateral cataracts. She is now is college and is participating in a Voc Rehab program for functionally blind persons.
You are most definatly correct about finding this info on the net. I had searched for others for years when she was little but gave up for lack of new places to search. I have even surfed the net but not come up with much in new research. My husband just discovered this new program, Web Ferret. That is how I found this site. Drop a line.

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• Re: Ichthyosis information Gianfranco 17:02:42 11/04/99 (0)

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: : 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.



: Les,
: My daughter was born with congenital lamellar icthyosis and she is now 18 yrs old.  She is a different sort because she has the more rare side effect of bilateral cataracts. She is now is college and is participating in a Voc Rehab program for functionally blind persons.  
: You are most definatly correct about finding this info on the net.  I had searched for others for years when she was little but gave up for lack of new places to search.  I have even surfed the net but not come up with much in new research.  My husband just discovered this new program, Web Ferret.  That is how I found this site.  Drop a line.



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