Date: 11/11/2021

by Bailey Pretak

Words. Words have the ability to make a person laugh or to fall in love. Words can hurt or heal. They can take someone to another time or another place. Words can make someone feel like they are seen or can cause someone to see things differently. Two people in our community have chosen to take the power of their words to inspire children around the world.

Andrea Rustad, from Minnesota, grew up with a skin condition, atopic dermatitis, and as a result became interested in dermatology. She first learned about ichthyosis when she volunteered as a camp counselor at Camp Discovery. While there, she heard heartbreaking stories from children about the social and bullying challenges that they faced regularly. This led her to pursue ichthyosis research as a medical student with her mentor, Dr. Amy Paller, at Northwestern University in Chicago. She discovered from the families she interviewed that these challenges often stem from the general public’s lack of knowledge on skin conditions.

Rustad thought a book about ichthyosis could help address this.  It could help explain ichthyosis on a level that would make sense to children and could be read to the classmates of kids with ichthyosis.  “I heard from many children with ichthyosis that they don’t often identify with characters in books or movies,” she said. “I wanted to provide more representation for these children with this book, so that they can read it and identify with the characters and know that they are not alone. Recognizing the complexities, uniqueness and strengths of individuals helps us understand one another for every aspect that makes us who we are.”

The forthcoming book will be called “Skinvincible”. It follows a young girl with ichthyosis through a day in her life as she prepares to perform in a talent show. Along the way, it describes what ichthyosis is and how this affects parts of her daily life. It touches on bullying and how to stand up for yourself, as well as being a good friend. 

Rustad’s hope with the book is that “those who have ichthyosis, and their families, feel represented…that this book educates others about ichthyosis, make kids with it feel less alone, and decreases bullying.” She said she wants to be a voice for these kids and is honored to be telling their stories. There is no set date yet for publication, as illustrations need to be completed, but FIRST will notify members once the book is available. 

Four thousand miles away, Jolien van der Geugten from the Netherlands is making her own splash with her children’s book “Luke & the Tiger”.  She said her 6-year-old son, Lucas, was the inspiration for writing it.

Lucas was born with x-linked ichthyosis and when he started school, she searched for a storybook to explain to his classmates a bit more about his skin condition, but could not find anything.  “This book gives me the feeling that I can do something for him,” van der Geugten said. It is vital that “children learn about differences between people at an early age, so that there is less prejudice and misunderstanding due to ignorance.” 

In the story, Luke is the brave hero. He serves as a role model for children with ichthyosis, as they recognize themselves in the story and realize they are not alone. “Luke & the Tiger” is available now in Dutch and will be printed in English at the beginning of November 2021.  Visit www.lukeandthetiger.com to pre-order your copy.

                         More Writings About Ichthyosis                        

Andrea and Jolien are not the only two who have graced the world with stories of ichthyosis.

Check out some other authors from within our family:

• Courtney Westlake, A Different Beautiful

FIRST member, Courtney Westlake explores what it was like for her family to raise a child with harlequin ichthyosis.  Throughout the book, she shares what they discovered about true beauty and teaches through her personal experiences how we can “celebrate God’s version of beautiful in our lives, especially within our differences and struggles.”

• Anne Kaier, Finding Refuge With the Skin I’m In

Shared recently with FIRST, Anne Kaier wrote an article for the disability column of The New York Times.  In it, she shares the “delicate balance of talking about her ichthyosis without it sounding frightening or scary and without sugar-coating the struggles.”  Her words help those unaffected to better understand our daily struggles and remind the affected that sometimes it’s okay to not be okay when we face our daily challenges.

• Aliya Shahnaz Kraybill, The Unexpected Benefits of Social Distancing
  If you missed hearing about one of our younger FIRST members, be sure to check out Aliya’s article written for a contest with The New York Times.  She ended up placing in the top 20 with her story about the possible benefits of social distancing…that “after this experience, we can better understand how individuals who are continuously ostracized by society feel on a daily basis” and to learn that “empathy is more important than fear.”

Note: This is not an exhaustive list. Check out the Resource page on FIRST’s website to learn of other books and articles written by our members. If you’ve written a book or article that we missed, please contact the FIRST office, so we can add your book to our site.