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#26340 - 05/09/10 06:28 PM Re: I hate Icthyosis [Re: Hayley_Hayley]
Kasi :) Offline
New member

Registered: 05/09/10
Posts: 4
Loc: North Carolina
Hey Hayley,
My name is Kasi and i was reading your post... i also have icthyosis vulgaris and i know what it can be like.. i was born with it and i have suffered teasing for it my entire life.. however, i've also had some great friends who accept me and love me.. and occasionally pick some of my flakes off occasionally.. lol just know that no matter what you are beautiful, and nobody can take that away from you. i know you dont know me.. but i offer my support or anything you need. i understand your situation. if you like email me at kasi_rhianna@yahoo.com
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Kasi Rhianna

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#26538 - 06/23/10 12:41 AM Re: I hate Icthyosis [Re: Kasi :)]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
Hayley...Like you I hated having ichthyosis. Some days I still do. When I was a kid people called me frosty the snowman. It does get better to deal with. The worst thing is when you get old enough to date. Luckily, all the guys I've been with don't care about the skin. They accepted me for it. It's hard to deal with. Everyday still I have people asking me if it was contagious. I get stared at and all sorts of things. But I learned that I am who I am. It doesn't matter what I look like. Beauty on the outside isn't permanent. Even the most beautiful women get wrinkles when they get old (unless you're Joan Rivers who uses plastic to look young). I know it's tough kiddo. I remember being your age. It'll get easier. Ignore the teasing and stares. It'll be alright. As for lotions, I found this stuff called Cetaphil. It's a white bottle with blue and green label. They have a face cleanser, skin cleanser, soap and a lotion. It's expensive, but it works. Keep your chin up kiddo.
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26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#26559 - 06/25/10 11:28 PM Re: I hate Icthyosis [Re: Adrienne1]
Rustina Offline
Member

Registered: 05/30/10
Posts: 11
Hayley, I sent you a private message as well, but I wanted to comment on how great salt is!!! I read on here once about salt swimming pools and the beach, but I have been pouring table salt in my daughter's bath water and letting her play for about 30 min or more and her skin comes out so smooth!! The dead skin just wipes right off and then I put all of her lotions on her. (She uses laclotion 12% and vaseline). Typically with the lotions, she would still have white flakes somewhere on her every day, but the salt seems to have helped that as well. I saw improvement after one salt bath!

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#26564 - 06/27/10 12:07 AM Re: I hate Icthyosis [Re: Rustina]
Adrienne1 Offline
Member

Registered: 06/16/10
Posts: 24
Loc: Visalia, CA. Tulare County
I always used a capful of baby oil in a tub of bathwater. Sometimes, two capfuls. That would lossen the flakes and heal the fissures to the point where an ordinary loofah would rub the flakes off.
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26, affected (CIE I think)only one in family. Mother to Riley 22 months, unaffected.

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#27277 - 12/21/10 12:51 PM Re: I hate Icthyosis [Re: Adrienne1]
grassak Offline
Member

Registered: 11/26/09
Posts: 42
try melrose hand and skin cream ... work wonders for me ... I have IV .. and when I apply that cream no one even doctor cant see that I have it for the next 20-24 hours ... dont worry it will get better soon ... as soon as you turn 16 find good moisture and a girlfriend smile

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#27996 - 10/28/11 12:37 PM Re: I hate Icthyosis [Re: Hayley_Hayley]
festa12345 Offline
New member

Registered: 10/28/11
Posts: 1
Thank you. The more knowledge.

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#28138 - 12/21/11 12:20 AM Re: I hate Icthyosis [Re: Hayley_Hayley]
GeorgeCooper Offline
New member

Registered: 12/21/11
Posts: 1
Loc: 1701 Edgewater Ln, Palmetto, F...
Well, I don't think this is a very big issue. If you avoid such guys and make other good friends then you will definitely feel better. Just avoid those guys who is making fun of you. Try to concentrate on your career and studies first. You are good in a studies then these guys will surely apologies to you one day. And one important thing for you, keep silence rather than making a turmoil.

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#28142 - 12/24/11 01:52 AM Re: I hate Icthyosis [Re: Hayley_Hayley]
Anonymous
Unregistered


This is really great what you guys are doing here. Im Andrew (17) and i was born with ichthyosis. I like to use Amlactin 12%. It works well for me. Winters are tough, but when it warns up here in Texas, my skin feels better. Thankfully, i am blessed because my condition is no fatal. I think God made like this for a reason. Keep your head up. :-)

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#28197 - 01/13/12 09:43 AM Re: I hate Icthyosis [Re: Hayley_Hayley]
Anonymous
Unregistered


Hello!

When I was 12 I would sit and pick at my skin thinking that if I pulled all the scales off they wouldnt grow back. However now I'm 24 and a college grad and have a whole new outlook. The TRUTH is it doesnt get better but you have to learn how to make it work for you. I buy clothes that are cute and work for me. I tried lotions: they dont work. The only thing that works is Pure Shea Butter and Dove soap. About your friends, they come and go. Its up to you to stand up for yourself. If you stop making it a big deal other people will. They only make fun of you because you let them see that it bothers you. But if you stop and take a closer look at them you will see they have a lot of things wrong with them.


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#28234 - 01/30/12 09:53 PM Re: I hate Icthyosis [Re: Anonymous]
Anonymous
Unregistered


I also use AmLactin 12%! It works well on some parts, but the stubborn areas like around my hips and the back of my legs are still there..currently looking for a new method of treatment. I am 16.

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