Lymphoedema is a very rare disease in children and young people that can make the young person feel that they are ‘alone in the world’. The International Lymphoedema Framework is wanting to validate a Quality of Life tool to give greater understanding of how this condition affects the life of the person who has it. We asked children aged 5-12 years and young persons aged 13-21 years who has lymphoedema for their help by answering a questionnaire.
UPDATE MAY 2022: The questionaire is closed
We had more people complete the questionnaire than we had hoped for – especially as it is a rare disease. Thank you to all of you whose child or young person took part, and to those of you who promoted it. Analysis of the data will start soon and once we have those results you will hear about what these young people think about their quality of life living with this condition.
An important aspect of the Children’s project is the organisation of international educational camps for children and young adults with lymphoedema. The first one was held in Montpellier, France in June 2012. The camp was based on a model that had been running for over 10 years in Montpellier. 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.
In 2017, a second international ILF camp was run in Turin, Italy, in partnership with the Italian Lymphoedema Framework and organised superbly by Elodie Stasi and the Italian team. 23 children with their siblings and parents from France, Italy, Canada, South Africa and Southern Ireland attended the camp.
This was a deeply moving event with over 80 people attending including the therapy teams from France, Italy and Ireland.
The camp involved therapeutic workshops as well as many fun activities and new developments such as new approaches to aqua-exercise for children and climbing events that were immensely enjoyed by the children (although viewed with some trepidation from parents). The children and parents were faced with the enormous challenge of mosquito bites that caused huge problems for many including one child who developed cellulitis. This reinforced our need to understand the risk of these issues and the fear this causes parents and proved a surprise to the clinicians attending.
In 2018, ILF invited children and their families to join a special day on 9 June in Rotterdam during the ILF 2018 Conference. The Children’s Day offered sports, psyche, relaxing, nutrition, lifestyle and creativity – all around the theme ‘Journey through the lymphatic system’.
During 2017, the ILF undertook a mixed methods research project to try and understand the challenges of self-management for children, adolescents, parents and professionals.
The difficulty of parents finding accurate information about lymphoedema was once again identified as a huge problem as was the debate of whether surgery plays a role in treatment and the ongoing quest for cure. Isabelle Quere is undertaking a consensus project to clarify some of these issues and the ILF will develop new educational materials with these findings.
During the camp in Turin in 2017, a quality of life tool, initially developed in France, was further validated in English and Italian. In 2018 this work was extended in Rotterdam (for Dutch children who attended the ILF conference) and through the Danish Framework with Susan Norregaard holding a day meeting with the children and families from her country. This was the start of development of outcome measures dedicated to children.