Topic Options
#4702 - 05/28/06 04:06 AM So I have Ichthyosis ..
Anonymous
Unregistered


How is it pronounced anyways?

I'm 19 years old and I've learned through my own research last year that I have Ichthyosis vulgaris (inherited from my father). The first time I remember noticing my dry, scaly, skin was when I was about 13 years old, and my buddy used to joke about me having "snake's skin" when backyard wrestling and the like ..

I don't have serious ichthyosis .. only have it on my legs, and trunk region. I'm going to buy Lac-Hydrin 12% and see if it helps. I know that these creams won't cure the ichthyosis, but do they stop the scales from forming at least?

Appreciate the help.

[This message has been edited by Porn (edited May 28, 2006).]

Top
#4703 - 06/07/06 10:41 AM Re: So I have Ichthyosis ..
thursa Offline
Member

Registered: 06/07/06
Posts: 10
Loc: Evans Head, NSW, Australia
Hi "porn"

ick-thee-o-sis

I am 37 and have i.vulgaris too. I remember getting called snake-girl etc when I was in school. Nothing ever stops the scales from forming believe me I have tried everything! It's a very labour intensive disease. I just keep my skin very well moisturiesed and I have my good days and bad days. I don't use soap or anything with lanolin in it, I try to use natural products but my lifeline in a product called Aquacare which is a urea based cream.
Cold, windy weather makes my skin worse and hot humid weather makes my skin look almost normal but if I get too hot that unbearable because I don't sweat. I think you just have to work out what works best for you. It's been a long haul of trial and error and forever hoping that there will be a cure one day.

Top
#4704 - 06/08/06 05:00 AM Re: So I have Ichthyosis ..
Promiseland_dup1 Offline
Member

Registered: 02/13/03
Posts: 536
Thursa,

You may want to get genetically tested or get more derm's opinions because you should be able to sweat when the weather is right. Vulgaris, even the severe kinds, should allow for sweating. If you cannot sweat at all, you may have another kind of ich.
_________________________
Don't ever lose hope when
there is a promised land, and "sweat" dreams

Top

Moderator:  Laura Phillips, Sideshow_bob 

Copyright 2012 Ichthyosis Information