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#19828 - 08/24/00 10:35 AM Mens Forum
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello all I just thought I would post a message concerning the mens point of view concerning my type of ich. I have X linked and never considered it a hindrance to relationships.When growing up the only creme I used was Eucerin which didnt help itching.I tried every over the counter creme and nothing worked until being prescribed Lachydrin 12% lactic acid in 1983.Its not for everyone, but it changed my life. One application in the morning and sometimes when it is cold, an application at night, and the the scales on my legs and arms are gone.It also helps greatly with itching on my back and torso.The environment also helps my kind of ichthyosis.The scales begin when the temperature falls below 70 degrees. I can feel the tightness come on and the itching beginning about the latter part of October and lasts until about March.My hope is that many people will post to this site and give us your views on how you cope with ichthyosis.
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Les Avakian

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#19829 - 09/13/00 05:56 AM Re: Mens Forum
Steven Sobkowski Offline
Junior Member

Registered: 09/13/00
Posts: 3
Loc: Tamarac, FL, USA
Hi all ..
Thought I would drop a post to this board since I was just exploring the new bulletin board here and I must say its great. I really appreciated all the hard work and effort that is put into this web site! [img]http://www.ichthyosis.com/ubb/smile.gif[/img]

I am 33 years old and was born with either EHK or CIE <doctors can't seem to make up their mind .. but I think it is EHK (Euro something or other <grins> ). Basically I have tough scales on my feet and sometimes my hands peel. My face is always red and I have a lesser reddish color over the rest of my body.

I live near Ft. Lauderdale, Florida and during summer months the tempature is really rough on me, but when I lived in NY I found during the winters my skin really hurt and down here it never hurts .. so I guess it is a trade off.

I have never met anyone else with Ichthyosis, and unfortunately wasn't able to make the last 2 FIRST conferences... but someday I hope to meet someone else with this disorder just to swap questions face-to-face. Until then if you are looking for an ichthyosis pen-pal drop me an email or ICQ me (number is in my profile).

Until the next time .. Take Care All --
Steven Sobkowski
sobkowsk@bellsouth.net

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#19830 - 07/17/01 07:26 PM Re: Mens Forum
Ken Bernau Offline
Junior Member

Registered: 07/17/01
Posts: 1
Loc: Simi Valley, CA , USA
I, like Les have been using Lachydrin 12% since the mid 80's and seem to have similar complications with Ich and results from using it. I have not had my Ich officially diagnosed by a doctor mostly because every family doctor I had looked at me like a lab experiment and knew less than I did about it. This website and message board is amazing.

[This message has been edited by Ken Bernau (edited July 17, 2001).]

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#19831 - 07/18/01 01:17 AM Re: Mens Forum
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Welcome Ken to the men`s section of the ichthyosis bulletin board.Thank you for posting how well the Lachydrin has worked for you.We are very lucky to be living in California where the weather is mild as compared to the midwest and east coast.If you are in search of discovering what type of ichthyosis you have,the U.C.L.A Dermotolgoy Clinic would be a good start since it is not too far away from Simi Valley.The test for X linked is very easy.We lack the steroid sulphatase enzyme. When you lack steroid sulphatase, there is a very high amount of cholesterol sulphate present.When cholesterol sulphate is applied to the skin, it causes scaling. For more information you can contact the ichthyosis foundation, FIRST at (215)631-1411.You can also contact the Ichthyosis Registry at the University of Washington at 1-800-595-1265.Take care Ken, by for now. Les
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Les Avakian

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