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.

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.)

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



Story Archives:  2021, 2020, 2019, 2018, 2017, 2016, 2015, 2014, 2013, 2012, 2011, 2010 and prior

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