Primary lymphoedema is a rare and orphan disease due to a failure in the embryonic lymphatic system development. It can cause large body distortions, physical disability and psychological suffering that deeply affect the quality of life of patients and their families. Children often feel different and “alone in the world” with their condition.
In order to help children with Lymphoedema, the International Lymphoedema Framework (ILF) and the Partenariat Français du Lymphoedème (PFL – the French Lymphoedema Framework) are working together on the Children’s Project.
An important aspect of this project was the organization of a special camp for children and young adults with lymphoedema which was held in Montpellier, France in June 2012. Nine children and young adults from four different countries attended the camp and took part in the many Therapeutic Education Workshops and Creative and Leisure Activities. They not only learned a lot about self-management of their condition but more importantly, had lots of fun. The participants also contributed to the shooting of the film “Children and lymphoedema”, an educational tool designed to explain to children what primary lymphoedema is, including testimonials on some of the children’s most important questions about their condition.
The ILF and PFL are planning further development and implementation of a structured therapeutic education program for children and their families. The purpose of this program is to empower children, families and their carers (doctors and physiotherapists).