Frequently Asked Questions (FAQ)
The book is certainly suitable for children without ichthyosis. It is a colorful and cheerful picture book about a boy, a tiger and other wild animals. Children are curious to see if Luke manages to find the cubs.
During the story, children informally learn that not everyone has the same skin and that Luke has ichthyosis.
The book is also suitable for children with skin conditions other than ichthyosis.
During the story, children informally learn that not everyone has the same skin. Luke explains in the story that he has ichthyosis. Children with other skin conditions can compare themselves to him. Do they also experience flaking or itching? Do they also use oily creams?
Moreover, with his skin condition, Luke is also the hero of an adventure, an example for all children with a skin condition.
Ichthyosis is an umbrella term for around twenty different types of skin disorders, most of them rare. Although there are different causes, most of them are genetic. This means that the mum and/or dad needs to pass the ichthyosis gene onto their child.
Depending on the type of ichthyosis the child may experience symptoms including itch, redness and scaliness (flaky skin). These symptoms can sometimes cause hearing, eyesight, mobility, feeding and overheating difficulties. There is no known cure, so children and caregivers need to frequently apply creams, ensure they drink enough water, get enough rest, manage wound and eye care and plan around sporting activities which may result in dehydration. It is hugely important to promote children’s psychological wellbeing by making them feel included, valued and accepted.
If a student is affected with any skin condition, including ichthyosis, it is often better to acknowledge this at whole-school community level as early as possible.
This book can encourage a natural conversation to happen within a classroom about difference (or unique beauty) and provide an opportunity for children to ask questions respectfully.
In fact, many parents and children enjoy being invited into the school or classroom to chat with the other students in order to explain what the skin condition is, how it affects the child and how they can support their new friend at school.
This English translation was made possible by the Under Your Skin Foundation and an investment of the author.
You have the right to dissolve the purchase agreement within 14 days after receiving the product.
If you wish to exercise this right, you must notify WYS Research & Education in writing within 14 days at email@example.com
You must then return the book undamaged to WYS Research & Education within 14 days, at your own expense.
WYS Research & Education, P.J. Troelstralaan 18, 3818 KT Amersfoort, The Netherlands
If you are living in UK or Ireland, you can order the book for a reduced price through Ichthyosis Support Group.
The book will be available only on pre-order at the FIRST National Conference in Providence, USA in June 2022.
The book will be available at the congress of Rare Skin Diseases in Paris, France June 7-9, 2022.
If you have suggestions how to make the book available in shops worldwide or at patient meetings, please contact me.(firstname.lastname@example.org).
Please, send an e-mail to the author Jolien van der Geugten (email@example.com). She would be glad to answer your question.
This book is available since May 2021 in Dutch (The Netherlands), from November 2021 in English and in May 2022 in German.
It is possible to translate the book into other languages. But then the guarantee of a minimum purchase of 500 copies is necessary. Please, send me an email when you would like to explore the possibilities.