Julie and the sea shells
A book about the chronic skin condition lichen sclerosus
Julie is five years old and has to live with lichen sclerosus, a chronic skin condition. This little book written for affected children and their families explains and informs about the condition in a playful way.
This little children’s book is about lichen sclerosus, a skin condition even doctors are often not familiar with. In a playful way, it describes how a preschool-girl and her family deal with this chronic condition affecting the exterial genitals. By reading this delightful story to their child, parents can explain about the genital area and convey optimism regarding lichen sclerosus at the same time. This book was initiated by the Lichen Sclerosus Association Switzerland. Every family of an affected girl should have this book and it should be made known to Gynaecology and Paediatric Congresses
Foreword Dr. Marlene Heinz / Paediatric and Adolescent Gynaecologist
Feedbacks:
The educational book "Jule und die Muscheln" has helped our daughter, us as parents and our whole family to classify the illness and to see a way in the completely new situation. That was a huge relief. The fact that we were then able to contact the parent supervisor of the Lichen Sclerosus Assocation and tell our daughter one to one about another girl who has the same illness was another important step towards classifying the illness and dealing with it positively. We are very grateful for the enormous work that the Lichen Sclerosus Assocation Switzerland is doing, it is a great gift for the affected persons and their relatives.
Thank you for the quick delivery of the book. What really astonishes me is the fact that my daughter and I learned and read tips in this book that no doctor had ever given us before. My daughter now also checks her vulva very regularly with the mirror supplied by you. :-)
I'm glad the Lichen Sclerosus Association helped me so quickly. After making contact, I immediately received an address of an experienced children's dermatologist for my daughter. In addition, I received valuable tips from other parents with affected children. The family doctor, who did not know the illness, apologized to us. She is now also sensitized.
The book is available in book shops (ISBN number 978-3-9524982-1-7) and
through the Association’s own book shop (www.lichensclerosus.ch / Buch-Shop)
for 28 CHF/ 24.50 Euro ($ and £ price upon request).
The book is available also in German (original version), French and Italian. Reduced fee for registrered members.
Contact: office@lichensclerosus.ch
Lichen Sclerosus Association Switzerland
Based in Switzerland, active throughout Europe