It’s almost time for summer camp! Every five years, children and adolescents affected by primary lymphedema can participate, with their parents and brothers and sisters, in a summer stay organized just for them by the Primary Lymphedema Reference Center (Montpellier University Hospital), the French Lymphedema Partnership, the Italian Lymphedema Framework and the Lymphido and AVML patient associations.
The location is chosen carefully and adapted to the physical conditions of the participants. The medical teams accompany them throughout these busy days. It is in this privileged setting that these families from around the world, in search of meaning and answers, go to meet other affected families. A connection is established between them, through sharing of experiences, doubts and tips. The idea, during these days, is to unite those who feel alone in the face of illness, and, beyond these camps, to help them improve their quality of life.
Lymphedema: sometimes a daily impact on quality of life
Lymphedema sometimes impacts the quality of life of patients on a daily basis. And for some of these children, these adolescents, this can also mean having a slightly “different” life from the other young people they meet. If some do not experience pressure or the gaze of others, for others, this illness, depending on its state of progress, can involve a complicated relationship with the body. Even more so if they don't know anyone else who like them has an arm, leg or foot deformed by lymphedema.
Because lymphedema often means restrictive care. And in the long term, some of the patients and families concerned may run out of steam and feel helpless.
The objective of this summer camp is simple and ambitious at the same time: it is to offer a reassuring place and a space for meetings and sharing to these families. It allows them to work on self-confidence and confrontation with the views of others to live as best as possible with their lymphedema. In this quest, they are not alone: specialized health professionals and volunteers accompany them, guide them, advise them.
And for the participating professionals - doctors, physiotherapists, nurses, etc. - it is an opportunity to discuss their practices, their bandaging and drainage techniques with their colleagues from elsewhere. An international research project on quality of life with primary lymphedema is also associated with each camp.
Focus on previous editions
It was in 2012 that the first edition was born with an international camp taking place in Montpellier. The disease was poorly understood at the time, and there was no action aimed at children. Professor Isabelle Quéré (CHU Montpellier) joined forces with Professor Christine Moffatt (International Lymphœdema Framework) to create this first camp. It brought together 10 families from France, the United Kingdom and Sweden for several days. On this occasion, a film was being made highlighting testimonies which will struck a chord with community of patients and parts of the general public. These interviews with children were broadcast a few days later during a conference in the large hall of Corum in Montpellier. At the end of the screening, the audience giving a 15 minutes’ ovation recognizing the work done in the project; and the expected results are numerous. The parents, very moved. It was at that moment that Professors Quéré and Moffatt and their teams realized the importance of what had been done for families and its scope in the field of lymphology.
In 2017, they joined forces with physiotherapist Elodie Stasi and Professor Roccatello (CMID - Coordinating Center of the Interregional Network for Rare Diseases of Piedmont and Aosta Valley (North-West Italy), San Giovanni Bosco Hub Hospital, and Department of Clinical and Biological Sciences of the University of Turin, Turin, Italy) to create a second camp in Candia, Italy.
These first two camps were the necessary springboard for the creation of other actions aimed at children with lymphedema throughout the world. Similar program has since been created in the USA (Camp Watchme) and Turkey.
Movies
Discover the films from the 2012 international camp with interviews with the children.
Check out images from the 2017 international camp.
Other actions
Alongside these camps, the Montpellier University Hospital organises annual lymphology days. Planned: multidisciplinary consultations, therapeutic education, creative activities, nature outings, etc. Parents and siblings are also invited.
Back the last sessions here: Montepellier Lymphology Days for Children and Young People - International Lymphoedema Framework.
In Italy, a national camp has been organised every year since 2015.
For more information, contact Elodie Stasi:
In the United States, camps “Watchme” for children with primary lymphoedema are organized. Find out more about American camps on the website: https://www.brylansfeat.org/campwatchme
