Founded in 1981Educate, 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.
On the second of July 1996, I was born with Netherton syndrome. Doctors had observed and predicted I wouldn’t make it past the age of three. They also thought that I would be put on tube feeding for the rest of my life. I’m glad to say …they were wrong.
Now that I look back after sixteen years, (Read Arya's story.)
At 19 years old my mom went to the hospital because she was leaking amniotic fluid. She was told it wasn’t amniotic fluid and that I was just sitting on her bladder so it was normal. She knew something wasn’t right. A day later she went into labor and I was born 4 weeks early on March 19, 1993. Everyone expected a healthy baby. She only had two ultrasounds and they both came back great, showing no complications at all! (Read Stephanie's story.)
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)
There many more stories from our families. Please click one of the links to the right for additional stories.