Twice the Fun

One of our young members wished to submit her own story, in her own words. We are proud to introduce Ema.

FIRST by Ema H. (8 years old)

FIRST is a foundation that people with ichthyosis use. FIRST stands for "Foundation for Ichthyosis & Related Skin Types."  I was born with ichthyosis. I have been working hard on my skin so it won't dry up or heat up, from that day on. My skin does not function properly like some other peoples do. The type of ichthyosis I have is CIE. CIE stands for congenital ichthyosiform erythroderma. Every two years there is an ichthyosis conference somewhere. Like last year my mom and I went to Denver. Every two years I get super excited because trips are so fun and I love to explore with my family. FIRST helps people, like doctors, know what a baby had if a baby has ichthyosis.” ~ Ema

As the Communications Director of FIRST, I recently had the pleasure of speaking with this sweet young girl, regarding all of her favorite activities. As we spoke on the phone, for just a few short moments, there was one message I received loud and clear - ichthyosis has certainly not hindered Ema’s zest for life.  In fact, when she is not songwriting and singing, you may just find her choreographing dance routines with a few close friends (hip hop especially!). She rides her bike whenever she can and she loves to read.  She is now even learning to choose her own healthy recipes and helps mom prepare them in the kitchen. 

By all accounts, Ema knows joy. 

But here is the part of the story where I found out something else - Ema also shares joy.  As a part of Ema’s skin care routine she is required to take two baths every day, but that fact simply does not faze her in the least. “Two baths are twice the fun!” she said. 

I took a moment to imagine a world where we all shared Ema’s attitude.  Would it be more peaceful?  More tolerant?  Would it in fact be…twice the fun?

As I hung up with Ema, it occurred to me that sometimes, some people are simply born with a spirit that cannot be broken, and, that I had just had the pleasure of speaking with one of them.




Ema's story was featured during ichthyosis awareness month 2013.  To read all of the stories featured during Ichthyosis Awareness Month 2013, click here.


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