I’m so excited about it! It is called Skin-Vincible and it is a storybook about a girl with ichthyosis, a rare type of skin condition, written to help spread awareness about the ichthyoses, share an anti-bullying message, and provide positive media representation for kids with ichthyosis. You can purchase the book and read more about it here, and it will be available through Amazon and Barnes & Noble later this year!
The ichthyoses are a rare group of skin conditions involving skin scaling, thickening, and inflammation that is usually widespread on the body. There are many types of ichthyosis with varying appearances and unique complications. People with ichthyosis can have a lot of itch, pain, and mobility limitations due to their skin. However, one of the biggest issues they face is the lack of public knowledge and consequent mistreatment, rudeness, and bullying from others.
I first heard of ichthyosis when I volunteered at Camp Discovery, a camp for kids with severe skin conditions. Meeting campers and co-counselors with ichthyosis, and hearing their stories of social and bullying challenges, especially in childhood and adolescence, that they faced regularly motivated me to get involved with ichthyosis research and advocacy. I am very lucky to have Dr. Amy Paller, a world-renowned expert on ichthyosis, as my research mentor! I have gotten to meet many amazing people with ichthyosis, and have heard from many that the psychosocial challenges they experience often stem from the general public’s lack of knowledge on this condition.
We thought a book about ichthyosis could help address this by explaining ichthyosis on a level that would make sense to children and could be read to peers of kids with ichthyosis. I also heard from many children with ichthyosis that they don’t often identify with characters in books or movies. 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. We included photos that were sent in of actual children with ichthyosis as well! Recognizing the complexities, uniqueness and strengths of individuals helps us understand one another for every aspect that makes us who we are.
I’ve worked closely with the Foundation for Ichthyosis and Related Skin Types (FIRST) to represent the experience of those who live with ichthyosis in a children’s book format to spread awareness, provide media representation, and help address the bullying that children with ichthyosis face. It’s been an honor to get to know the members of FIRST throughout this process.
The book 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.
This book was carefully created with the valuable input of people with ichthyosis to ensure that it truly reflects their experience, although there are many types of ichthyosis and everyone’s experience is unique. We also were conscious about including a diverse representation of skin types and colors, other visible differences, and backgrounds in the illustrations. I hope that it makes those with ichthyosis, or any visible difference, feel supported and know that they are special and not alone!
To hear a discussion between me and Eileen, an amazing advocate for those like her with ichthyosis, click here! You can hear Eileen discuss her experience with ichthyosis and learn more about the book!