Ichthyosis is a collective name for various skin diseases. The look that Lucas enjoys has a huge impact on his life. “He has flaky, dry skin. That means you have to take good care of it,” mum Julian told EditieNL. “Twice a day, or more often, we have to rub his skin with greasy ointment. He’s noticed this all his life. He also has a lot of itching.”
Lucas’ skin is also more susceptible to infection and has little or no perspiration. “It can cause it to overheat. Then it will turn red.” Where children without the condition play outside with their coat on at fifteen degrees, this works differently with Lucas. “With Lucas you just have to calm down and open his coat.”
positive and strong
These are the things that made Julian when her four-year-old son was looking for books on the condition of his skin. “For him, but also for the school, because you want to tell your classmates and teachers,” Jolien says. “But there was mostly factual information. I was looking for something attractive.”
You couldn’t find it. “So I thought, why don’t I come up with it myself?” It soon became clear to her what kind of story it should be. “I wanted to make something positive and powerful. So no: what a pathetic kid on your side.” Because this is the message Julian wants to convey: “Someone is not the state of their skin. You are a person who has qualities and you want others to accept you for who you are.”
Julian came up with a story and Nick Bollins illustrated it. The result is the book George and the tiger. The boy in the children’s book is based on Lucas and also suffers from a skin condition. In the story, the main character Joris wakes up in the middle of the night and there is a tiger beside his bed who has lost her young. Together they search for and meet all kinds of animals. And they have one thing in common: they have a special complexion, just like Joris.
“Elephants can’t sweat, and the frog has poisonous skin and can’t hug,” Julian says. “At first, it wasn’t clear that the boy had a skin disease that is reflected in the story. I don’t want to start with: Oh my God, I’m itchy,” she explains.
No more explanation
Julianne got a lot of positive feedback on the book. “Also from unfamiliar families of skin diseases.” And Lucas himself, who also co-authored the book with his brother and sister, is very happy with it. “They read it in school and he liked it so much that he doesn’t have to explain it himself anymore. I think that’s cool.”
Besides wanting to show that people with ichthyosis can also be strong despite their limitations, Julian hopes the book can help others as well. “I think it can help reduce your loneliness. If you’re the only one in school who has ichthyosis and then you read in a book that someone else owns, you feel like you’re not alone.”
More children’s books about disorders
There are more books dealing with diseases, disorders, or other sensitive topics in children. “You have the Blaster series, which are picture books on different topics. One is about autism, but there’s also one about cancer,” says Dorothy Kras of Utrecht Children’s Library. “Books about ADHD appear regularly or books about sick parents. In the books the children involved play the leading role.”
According to her, such books can already play an important role. “It can help impart knowledge about the topic,” she says. “Sometimes there are books that provide information, but it also happens that the topic is in the background and the children are drawn into the story. They unconsciously learn something from them.”
Move to another place
By reading, you are putting yourself in someone else’s shoes. “And then you can understand it better in everyday life,” says Kras. “Ultimately, it contributes to acceptance and understanding.” According to her, books are bought mainly by parents who care for their children. “And the schools also want to have it. You can call it a niche.”