Meet Our Families
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.
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.
Ahmed - Yemen
What I can do is just to support my children how to deal with people teasing, laughing or walking away from them.
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.
Please click one of the links to the left for additional stories.