Meet Our Families
Here is your opportunity to get to know our truly remarkable families and share their inspiring stories.
Alyssa - McAlester, OK
Hi, my name is Alyssa, I’m 15 and I have EI.
Ashley - Lewistown, PA
The process of explaining ichthyosis started to be exhausting; I truly felt like no one would ever understand.
Jolien - the Netherlands
When my son was only nine days old he got strange spots in his face. They looked like wet yellow crusts. I called the midwife because my husband and I didn't trust it. They told us that it’s baby acne.
Jim G. - Santa Cruz, CA
I tried to describe what it was like to overheat. Those of you with ichthyosis know what I was describing; the rest of you are at the mercy of your imagination.
Reba B. - Owensville, IN
I was so blessed to have a wonderful mother who encouraged me to be “normal” in everything.
Treasure W. - Jackson, MS
I continued to do what I love. I kept acting, booking roles, and even getting scholarships for my acting ability .
There many more stories from our families.
Please click one of the links to the left for additional stories.