Books from the Community
Books
An Unexpected Adoption: The Girl Behind The Face
One woman’s unlikely personal journey to escape the crushing trauma of her past – and in the process help an abandoned child escape hers. This uplifting memoir is one of against-the-odds courage and resilience. It is raw, powerful and compelling, filled with lump-in-the-throat honesty, humour and love.
Did You Know You’re a Superhero?
This story follows Ms. Ella who has epidermolytic ichthyosis with KRT2, in her day with her mom as she goes on an adventure to spread kindness to other kids with very visible differences as well. She lets them know that they are in fact a superhero and that their difference is their superpower!
FIRST member, Courtney Westlake explores what her family has discovered in raising a child with physical differences and what she has learned about true beauty. Through her personal insights and experiences, Courtney shares how we can all learn to find and celebrate God’s version of beautiful in our lives, especially within our differences and struggles
Written by Lori Mitchell, whose daughter has vitiligo.
There is no mention of vitiligo in the book, only meeting people who are different than the main character, April. The story is told from the point of view of a little girl anticipating a visit to her grandmother’s house. Each day that she is waiting for the trip, the little girl encounters someone who is different from her. But, in each situation, that person is doing the same thing that April is.
Extraordinary! A Book for Children with Rare Diseases
Written collaboratively by mother and son, Extraordinary! A Book for Children with Rare Diseases opens up a child-friendly discussion about identity, inclusion, and self-concept in light of the challenges and silver linings of living with a rare disease.
A child with ichthyosis is represented on page five.
ICHTHYOSES: Clinical, Biochemical, Pathogenic and Diagnostic Assessment
FIRST is very excited to announce that Medical & Scientific Advisory Board members Drs. Peter Elias and Mary Williams, along with Debra Crumrine and Dr. Matthias Schmuth, have published a book on ichthyosis titled ICHTHYOSES Clinical, Biochemical, Pathogenic and Diagnostic Assessment. The authors hope that the book will prove to be a useful resource for families who would like to learn more about their condition. It will also be a useful tool for the staff at FIRST. Throughout their careers, Peter and Mary have been tireless advocates for patients with ichthyosis. FIRST is very grateful for their efforts on behalf of those affected with ichthyosis.
Frog wants to be anything but a slimy, wet frog. A cat, perhaps. Or a rabbit. An owl? But when a hungry wolf arrives—a wolf who HATES eating frogs—our hero decides that maybe being himself isn’t so bad after all.
Author Danielle Wheeler began writing about her experience with vitiligo, a condition which causes skin to lose its pigment. As she wrote her story, she began to realize that maybe what people with vitiligo need isn’t medicine or makeup… maybe they need something that celebrates the uniqueness of their condition in a world obsessed with cosmetic perfection. Maybe we all need to feel proud of our bodies and to feel included.
We have all experienced itch, whether from insect bites or dry skin, but millions of people worldwide have chronic or even intractable itch. Just like chronic pain, chronic itch interferes with a person’s ability to function – and even affects quality of life. Living with Itch offers relief, drawing on the authors’ vast knowledge of itch, the suffering it causes, and available treatments.
Lucy has vitiligo. She finds beauty in the patterns on her skin. She also finds beauty in the patterns she notices out in nature. Follow Lucy as she goes on a walk through nature, admiring everything she sees.
Luke wakes up in the middle of the night, because there is a tiger next to his bed. The tiger can’t find her babies and she asks Luke for help. During their adventure, Luke discovers that various animals have their own story regarding their skin, just like he has.
Itching and scalp scale are common and frustrating symptoms for patients with ichthyosis, particularly in children as they are unable to “resist the itch.” Learn about some tried and true practices that can help soothe the itch and make your child more comfortable.
Skin-vincible: A Story of a Superstar with Ichthyosis
Meet Cece, a young, spunky, confident girl who loves to sing and dance! She was born with ichthyosis (ick-thee-oh-sis; more specifically the congenital ichthyosiform erythroderma type), a rare genetic skin condition, and spends a lot of extra time caring for her skin. Cece doesn’t let her skin condition define her—she is a great friend, sister, and performer. Follow Cece on the day of her big performance in her school’s talent show, while learning about skin, ichthyosis, and standing up against bullying! For anyone who has ever felt different or alone, this book was written for you with love.
This is an uplifting and true story about a little girl who was born looking different from everyone around her. In this book, she describes how her rare skin disease affected her socially, emotionally and spiritually. She talks about what it was like to be teased and how she coped with the feelings that accompanied her experiences.
