A little girl with a sunshine smile
Crazy blonde curls and eyes that dream
She stares out her window
And wonders “what’s wrong with me?”

My name is Bailey and the stanza above is one I wrote to describe the beginning of my journey growing up with ARCI-lamellar ichthyosis. It wasn’t easy growing up being "different."  Parents wanted their kids taken out of my classes.  People stared at me everywhere I went.  Some kids wouldn’t play with me or touch things I touched. I was called Scaly Bailey.  Summer was always difficult because my friends were playing outside all day long but I couldn’t handle the heat since I couldn’t sweat.  I grew up feeling very insecure and thinking that I was ugly.  I was extremely shy as well, but thankfully I had the love and support of my family and close friends who never treated me like I was different.  Over time I came to the realization that God created me and thinks that I am beautiful just the way I am.  I am His masterpiece.  This changed my life.  I now have confidence in my skin and consider it one of the biggest blessings to ever happen to me. It has made me who I am and has shaped my interests and desires for my life.

My skin disorder has taught me that inner beauty is far more important than outer.  I may not have been the “popular” girl, but I believe my kindness and sweetness is what brought me to win Homecoming Queen in my high school.  I may not be the most gorgeous girl by the world’s standards, but I didn’t have to get my heart broken like so many of my friends over guys who liked them just for their looks.  When I finally did fall in love in my early 20s it was real and true; he loved me and my skin.  I may not always fit in, but performing on stage I am home.  My love for theatre, music, and dance has grown into an intense passion; something that I will always make time for throughout my life.

I know what it feels like to be an outcast, to be treated differently because of the way I look.  My heart breaks for all the lies that children are being taught through the media about beauty.  That is why I’m continually trying to teach any girl in my life that they are beautiful just the way they are.  I do this through conversations with my dance students and through a Princess Tea that I lead once a month. I am grateful for all the lessons I’ve learned living in my skin.

I’m also grateful for FIRST.  They have taught my family everything we know about my ichthyosis.  Growing up in a small town, doctors didn’t know what was wrong with me.  I was actually life-flighted to another town at birth where I was diagnosed with lamellar ichthyosis but they couldn’t really give more details.  It was through a FIRST conference in Indianapolis where I finally met someone else with the same skin as me.  The funny thing?  Our reaction was to stare at each other.  I also learned about Camp Horizon through them.  For two summers in a row I attended the week long camp where I was around kids like me.

It is because of FIRST, the support of my hometown, and the love of my family & friends that I can end my beginning poem with “when she looked in the mirror this time being Bailey felt so great!”

Johnsonburg, PA

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This information is provided as a service to patients and parents of patients who have ichthyosis.  It is not intended to supplement appropriate medical care, but instead to complement that care with guidance in practical issues facing patients and parents.  Neither FIRST, its Board of Directors, Medical & Scientific Advisory Board, Board of Medical Editors, nor Foundation staff and officials endorse any treatments or products reported here.  All issues pertaining to the care of patients with ichthyosis should be discussed with a dermatologist experienced in the treatment of their skin disorder.

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