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.

Christine - Albequerque, NM

At the FIRST’s National Conference in San Diego, my doubts increased, but my determination to discover why my skin differed from most other people's skin remained strong.

(Read Christine's story)

Jelani - Raleigh, NC

Jelani, a member of FIRST, graduated from college in December with his eyes on an exciting future in his chosen field, Bioengineering.

(Read Jelani's story)

Ahmed - Yemen

What I can do is just to support my children how to deal with people teasing, laughing or walking away from them.

(Read Ahmed's story)

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.)

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