Celebrating Our AnniversaryEducate, inspire, and connect those touched by ichthyosis and related disorders through emotional support, information, advocacy, and research funding for better treatments and eventual cures.
Here is your opportunity to get to know our truly remarkable families
and share their inspiring stories.
I was born with lamellar ichthyosis 56 years ago in Brooklyn, New York. When I was born there was a gelatinous sac around me which some cultures call a veil [also known as a collodion membrane.] When the sac was broken and removed, the hospital staff saw that my skin was scaly and I was transferred to the intensive care unit. Eventually my parents were allowed to bring me home, although at that time there were no effective treatments for the condition. (Read Vanessa's story.)
When I was about five or six years old, I remember thinking it was a rash appearing on both my legs. “Mom,” I said. “What’s this?” The “rash” started to get worse and more cracks were appearing. I remember trying to scrub it off while in the bathtub, but whatever this “thing” was, it would not go away. I remember getting frustrated and crying when I realized whatever this was on my legs was not leaving any time soon. (Read Kendra-Ann's story.)
Valerie is The 2012 California Amateur Bodybuilding Association (ABA) Champion in the Women's Physically Challenged Class. She is also affected with keratitis ichthyosis deafness syndrome (KID syndrome).
Valerie’s childhood was difficult. Her disorder was at its worst, her family was emotionally dysfunctional, she was teased often, and did not receive much support to help her. She is legally blind, uses a hearing aid, and manages her skin as well as she can. (Read Valerie's story.)
Ashlynne B. - Abiliene, KS
The day Ashlynne was born was the best, and scariest, day of my life all rolled in to one. Four weeks early, she decided she was ready to meet this world. I knew there was a chance of complications, due to her being slightly premature, but after coming out of recovery and seeing the look on the doctors' faces, I knew there was a larger problem than low birth weight. (Read Ashlynne's story.)
Lauren H. - North Billerica, MA
It was April 17, 2004 and our daughter was about to make her grand entrance. Clueless is the only word that could be used to describe me and my husband. Bands of nurses and doctors paraded in and out of our room that night, checking monitors, supplies, and preparing the isolette, all while ignoring the two of us entirely. In hindsight, it was clear that something unexpected was happening. (Read Lauren's story.)
Brittany A. - Worcester, PA
I define myself by my loving family, lasting friendships and passion for helping children with special medical conditions NOT by the only complicated part about me: my medical history. I rarely discuss the fact that for as long as I can remember, through every stage of my life, my body has always given me a bit of a hard time. Consider this perspective a reflective 22-year recap of what it is like to ‘wear’ two chronic incurable conditions daily. My brother sent me the song, Shine On by Eric Bibb, which I adore. The following lyrics summarize how I currently feel about life with these conditions, (Read Brittany's Story)
Logan R. - St. Joseph, MI
Logan is 7 years old and has just finished first grade. He is the oldest of four children. His siblings are 4, 3, and 1 years old. He loves to read, and listen to, funny stories and jokes, and really enjoys comic books. He looks forward to going to water parks, and swimming at our beautiful beach on Lake Michigan every summer. He plays soccer and T-ball. Halloween and Christmas are his favorite holidays, and PBJ’s are his favorite food. His birthday is Christmas Eve, and he wouldn't change it (so far, anyway…) Logan has a gift for helping little kids and babies feel safe and secure, and he is very protective of his new baby sister (now one year old). Oh, and he has ichthyosis! (Read Logan's story.)
Ethan E. - Thomasville, NC
A 4 year old affected with non-bullous CIE, Ethan started taking an interest in incubating eggs and hatching chicks when he was 3 and his mother read him a story in which a chicken hatched from an egg. The family lives on an 80 acre property with gardens, but no chickens. The family got a few heritage-breed eggs and created a home-made incubator. Ethan tended the eggs and watched the chicks hatch. They hatched 2 baby roosters and 2 baby hens. When the hens laid more eggs, there were more chickens, and so on. Ethan decided to sell some of the eggs and donate the proceeds to FIRST. (Read Ethan's story.)
There many more stories from our families. Please click one of the links to the right for additional stories.