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#28091 - 11/22/11 11:44 PM Discovering I have Ichthyosis
MsBeccaBunny Offline
New member

Registered: 11/22/11
Posts: 2
Loc: US, WA
I've had Ichthyosis (unknowingly until today) for the last two years. I'm only a 16 year old girl, so of course this effects my self esteem greatly, and how I feel that I look. My case has dry, scaly skin, all over my abdomen, partially on my sides, sometimes a little bit on my upper thighs, and on my lower back. I feel awkard showing skin anymore because of my condition. I mean sure, I have a treatment for it, but not knowing whether or not it will get better with time truly saddens me. So the point of all my ranting is, that I know how it feels to be unwanted (though that may be far from the truth). I feel like I can't wear a bikini, or shorts anymore. I really do hope it gets better.

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#28092 - 11/23/11 09:47 PM Re: Discovering I have Ichthyosis [Re: MsBeccaBunny]
Hearsay Offline


Member

Registered: 01/16/04
Posts: 1449
Loc: Richmond, VA, USA
One thing that you need to know is that having ichthyosis will NEVER make you less than who you choose to be. Anyone that thinks you're unworthy of love or friendship because of your skin is someone you don't want to be friends with, either.

You're at a really rough age where a lot of your peers can be really shallow, petty, and at the same time think they know all there is to know about how the world works. I promise, it does get better!

Look into firstskinfoundation.org. They had a regional meeting in your area last June and coming up next June is the national conference in Denver. We have a LOT of teens attend the national meeting, and it might be worth coming for you. And even if you can't come, give them a call and they can find someone nearby that would be a good shoulder to lean on.
_________________________
Jennifer
Ichthyosis-en-Confetti Type 2
Husband, Nathan - 10, Elliot - 7, Oliver - 4, all affected.
I also have an unaffected daughter, age 8.


email: jennifer at confettiskin dot com
facebook - find me on "ichthyosis mommy spot" or "friends of ichthyosis"

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#28141 - 12/23/11 12:11 PM Re: Discovering I have Ichthyosis [Re: MsBeccaBunny]
ssajadh Offline
New member

Registered: 12/06/11
Posts: 4
Loc: Iran, Tehran
Hi
We must accept the reality of our situation and know that impossible is just a word for stopping thinking and trying. we must
search for the solutions of our problems, our lifetime; this is life and its reverse state is death. so search for your desired state and be certain there is something to satisfy you. a lot of people (e.g. Edison, G. Bell and ...) have proven us that impossible doesn't exist.

There is a will, there is a way


Edited by ssajadh (12/23/11 12:13 PM)
_________________________
We are designated

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