Monday, May 16, 2016

Ichthyosis Awareness Month 2016: Ashlynne's point of view

Every year for Ichthyosis Awareness Month I write a blog (or a few) from my perspective.  I write about what Ichthyosis means to me, how it has affected MY life.  But I can't tell you how it feels to be the one that actually lives with it each day.  So I figured, why not go directly to the source? So here is Ashlynne's story, from Ashlynne's perspective.... Enjoy :)

"Hi, my name is Ashlynne and I'm 13 years old.  I have ichthyosis.  I've had ichthyosis my whole life, so I don't really know what it feels like to be normal.  I want to know what it feels like to be normal.

Ichthyosis makes my skin red, dry, and flaky.  It makes it really hard to bend my knees and my arms.  Sometimes my tummy is tight too.  That just depends on the day.  I also get hot a lot easier.  And I can't sweat, so that really sucks because I can't cool myself off.  I don't get to do a lot of things that other kids get to do because I might get too hot, and because I don't bend very well, like Gymnastics.

I don't like having ichthyosis.  I have to take really long baths every night.  I hate to take baths.  And I hate how long they take.  I would rather take showers.  But I don't get to take showers very often because my mom said its not as good for my skin.  And I have to eat a lot because I need a lot of calories for my skin.  My mom is always yelling at me "Eat Eat Eat!", but I'm not always hungry.  I think Ichthyosis keeps me from making some friends.  Like, the popular girls may not want to be friends with me because they don't think I'm as pretty as they are.  I also hate it when people stare at me.  Sometimes when kids stare, their parents don't even do anything about it, and that's just rude.

But there are some good things about having ichthyosis.  I do have some really good friends.  And we get to go to conferences every other year.  This year, we get to go to San Diego!  I'm really excited about that.  At the conferences, I get to meet people like me, and I get to see other people that I already know, like Jordan, Abby, and Bailey.   And some times I get seconds at school lunch.  And also, sometimes, when people stare, I make crazy faces at them, and I know I wouldn't get away with that if I was normal. Someone has to teach them not to stare!  And a couple of weeks ago, there was a show on TLC called "Two in a Million", and that week it was about Ichthyosis.  It was really cool to see people that were like me on TV. 

What I want people to know about me is that I am normal on the inside.  I may look different on the outside, but I'm really just like them.  I have feelings too.  I love my friends, and my family, and my dog and cat.  I'm a big sister, and a good friend.  I like Slim Jims, and doing things that other, normal 13 year old girls do.  I LOVE Miranda Sings, and her husband Joshua David Evans.  They're YouTube stars, if you don't know who they are, go check them out!  I also really love reborn babies.  They are dolls that look very life like.  I like when I am out in public, and I have one of them, people stare at the doll instead of me.  Also, I don't want people to feel sorry for me.  I don't like it when people say "Oh honey, you poor thing!"  That's rude too.  And you shouldn't be rude.  In the words of Joshua David Evans, be nice to people!"

5 comments:

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  2. Love you Ash! For some reason while I'm reading this I've got GG on my mind, I think she wants you to know she's proud of the young Lady you are becoming! And me too! You keep up the great work and have fun in San Diego! God made you special for a reason! An I'm sure you will touch many lifes with your story! We should have get togethers more often! So we can EatEatEat even if we aren't hungry :) I live you guys bunches! XoXo -Nae

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  3. We adopted a little girl and got to name her Ruby Jane Rose. She is our little red rose! She has CIE and her genetic test may tell us more about her ichthyosis. As her parent, I want her to grow up sharing about herself like you have. Thank you so much!!!

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  4. My daughter, 5 years old, also has ichtyosis with confetti. It is good to read your story and experiences. We don't know anyone else with exact the same type of ichtyosis. So I would like to Get in contact with you and your mother. It would mean a lot to me. I hope to hear from you. Regards Sabine

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