Meet Our Families

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.

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.)

Janan M. - Tel Aviv, Israel

I would like to share with you my experience living with ichthyosis.

(Read Janan's story.)

Denise G. - New Orleans, LA

Denise highlights the changes that her skin endures during the cold weather.

(Read Denise's story.)

Erin H. - Madison, MS

FIRST member Erin Halvorson talks about her serendipity and falling for the love of her life.
(Read Erin's story.)

Katie S. - Attleboro, MA

Katie S. - Attleboro, MA

FIRST member Katie Smith is more than excited to share her story. After all, it's not just a story about living with ichthyosis. Nor is it simply a story about an "aha" moment, or the journey of a young woman setting out to find her true purpose. To Katie, her life, her skin disorder, her future, are all a part of something bigger, not just a story, but "an obligation to do good in the world." (Read Katie's story.)


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



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