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#25161 - 09/18/09 09:06 PM I hate Icthyosis
Hayley_Hayley Offline
New member

Registered: 09/18/09
Posts: 3
I hate this I have Ichtyosis Vulgaris and I am only 12 I have had it ever since I was born and it it really annyoing and it makes me made and frustrated kids always make fun of me and they will not stand nexy to me or anything my skin was looking good for a while cause I was on this medicine called Acutane and it really worked but I have to stop it for 6 months and my skin is very dry again and of course I have a severe case of Icthyosis Vulgaris in ohter words I have it I HAVE IT LITERALLY EVERYWHERE ON ME! it is so frustrating I just want kids to stop making fun of me and I have to take lotion to school with me and carry it around with me in my classes and I try to hode it with my hoodie and I have to carry around a mirror so please if you have any lotions that will work for my skin please tell me!
_________________________
~Hayley~

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#25166 - 09/20/09 02:33 PM Re: I hate Icthyosis [Re: Hayley_Hayley]
Les Avakian Offline


Member

Registered: 08/13/00
Posts: 680
Loc: Fresno, Calif. USA 93705
Hello Hayley
Welcome to our ichthyosis bulletin board. Many of our friends who have vulgaris are using the alpha hydroxy acid creams (urea,glycollic,lactic,and salicyllic acids).You might like to try Eucerin Plus, Carmol 10 & 20, Amlactin 12% ammonium lactate, Lachydrin 5% over the counter or Lachydrin 12% by prescription,LAClotion by Paddock Labs, Aqua Glycollic with glycollic acid, Dermal Therapy Alpha Hydroxy 10% urea/10% lactic (www.dermaltherapy.com),Keralyt Gel,& Kerol urea products. Those are just a few examples I can think of at the moment. Check some of the other posts for other products you might like to try. Take care Hayley and keep us informed.
Sincerely,
Les
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Les Avakian

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#25168 - 09/21/09 09:02 AM Re: I hate Icthyosis [Re: Les Avakian]
Glori Offline

Member

Registered: 08/14/00
Posts: 499
Loc: Elk Rapids, Michigan
If it makes you feel better, I am 40 and I still hate it too...but it does get easier in some ways.
I think the key for me in school was participating in activities that I was good at and that interested me. I was in theater from the seventh grade until I graduated and suddenly people paid attention to my talent rather than my skin. It gives your classmates a different aspect of YOU to focus on.
Don't slide into other people's negativity, find what you love and focus on the positive and remember, everyone on here has gone through exactly what you have. It may not be much comfort, but at least you know you aren't alone!
Feel free to post as much as you want, we are here for you!

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#25236 - 09/30/09 06:48 PM Re: I hate Icthyosis [Re: Glori]
Hayley_Hayley Offline
New member

Registered: 09/18/09
Posts: 3
Thanks!
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~Hayley~

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#25245 - 10/02/09 12:54 PM Re: I hate Icthyosis [Re: Hayley_Hayley]
Amber Offline
Member

Registered: 10/01/09
Posts: 5
Loc: North Carolina
I feel your pain.... I don't have Ichthyosis Vulgaris but I have something close its call
Lamellar Ichthyosis and, it is also all over my body. I am 21 and trust me I had my fare share of people that stare and make fun... even out of school. I probably heard any and every name in the book. But glori is right it will get better and easier over time. Just know that the people that make fun of you are just ignorant to your skin disorder and don't understand what its like to be you. The way I handled the people making fun of me was, I asked one of my teachers if I could write a report on my skin disorder and read it to the class to help them better understand what living in the life of a scaly person was all about. It really worked! And people started to defend me instead of attack me. If you try this let me know how it worked for you. God doesn't like ugly..... and we are beautiful in his eyes, thats all that matters.


Edited by Amber (10/02/09 01:11 PM)
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My name is Amber and I have Lamellar Ichthyosis.

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#25275 - 10/09/09 11:23 PM Re: I hate Icthyosis [Re: Amber]
alangreen Offline
New member

Registered: 10/09/09
Posts: 1
2 Hayley_Hayley

I think, if other kids are making fun of you the right thing will be to beat them.
_________________________
general health consultation

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#25551 - 11/26/09 08:52 PM Re: I hate Icthyosis [Re: alangreen]
grassak Offline
Member

Registered: 11/26/09
Posts: 42

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#26012 - 03/17/10 10:29 PM Re: I hate Icthyosis [Re: grassak]
Heidi Merk Offline
New member

Registered: 03/17/10
Posts: 1
Loc: United States
Hey Hayley
I know what your going through. 4th through 5th grade i was known as alligator skin...it pissed me off but i dealt with it. i used to daydream that my skin was in the developing stages off some type of warrior skin armor that was bullet proof of that i was descended from a tribe of alligator people O_o yes i was weird...i still am but thats beside the point...i didnt really have a point...anyways im in the 9th grade now and i wont wear anything besides pants because im afraid it will be 4-5th grade all over again. I dont even want to wear bathing suits anymore! on top of all that i have vitiligo on my face =_=' all you can do really is joke about it and act like you couldnt care less what people think! and if they are being real asses about it just act like you dont have time to listen or react to their bs smile it works for me

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#26032 - 03/20/10 03:41 AM Re: I hate Icthyosis [Re: Heidi Merk]
ichthydad Offline
New member

Registered: 03/20/10
Posts: 3
Loc: Lethbridge, AB, Canada
hi heyley
my name is brendan and im 14 and i have lamellar icthyosis kids used to leer at me and call me names but whenever they did i just shrugged it off and continued my life as normal so then they just got bored of it and stopped, that and one kid who kept on trying got wholloped. at my school some people avoid me but i just say "your loss im a really nice person and you will never know that because you dont like the way i look" if you ever want to talk about anyting heres my email: halo_freak_12@hotmail.com
_________________________
Proud Dad of Chesney (LI), Courtney (Unaffected) and Brendan (LI)

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#26124 - 03/30/10 04:04 PM Re: I hate Icthyosis [Re: ichthydad]
October Offline
Member

Registered: 12/12/07
Posts: 66
Loc: Boise, Id
As we mature so do our peers! I am 33 and have lived with IV my whole life--hang in there. It will get better I promise!
_________________________
LoveLife
October

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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.
_________________________
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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#28796 - 02/05/13 06:19 AM Re: I hate Icthyosis [Re: Hayley_Hayley]
Jazz Offline
Member

Registered: 02/05/13
Posts: 7
Loc: India.
Heya, Hayley
I am 23 and i feel the same..i tried every thing but nothing works..sometimes i feel really bad about my self but my mom loves me the way i am...just be positive and try to face it because no one will support you more than your family and yourself.
Just accept the fact that god has made us like that and we are different from the other people and we are special, because we have one special quality in ourselves than the other people out there dont have.
Love Kehkasha..
God helps those who help themselves.

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#28930 - 05/24/13 09:03 AM Re: I hate Icthyosis [Re: Hayley_Hayley]
JudyG Offline
New member

Registered: 05/24/13
Posts: 1
I am new to this site but Icthyosis has been a problem my entire life. My Derm wrote me a script for Soriatane. It is working and I wish I had started this years ago.

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