What's Your Story? We'd Love to Hear It!

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.

(Read Alyssa's story)

Ashley - Lewistown, PA

The process of explaining ichthyosis started to be exhausting; I truly felt like no one would ever understand.

(Read Ashley's story)

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.

(Read Jolien's story)

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.

(Read Jim's story.)

Reba B. - Owensville, IN

I was so blessed to have a wonderful mother who encouraged me to be “normal” in everything. 

(Read Reba's story.)

Treasure W. - Jackson, MS

I continued to do what I love. I kept acting, booking roles, and even getting scholarships for my acting ability .

(Read Treasure's story.)

There many more stories from our families.
Please click one of the links to the left for additional stories.