In September 2023, ENCA joined the PReS 2023 Congress in Rotterdam. Our presenters spoke about a range of topics that matter to families affected by rheumatic conditions - including fatigue, education and mental health.
We are delighted to share the recordings of those sessions here.
Marlies Allewijn shares her powerful and moving personal story about growing up and living with a rheumatic condition, accompanied by sand artist Gert van der Vijver.
Tim van Helmond and Jasper Oprins share their personal experiences of living with fatigue as a result of their rheumatic conditions.
Libby Newsome is an experienced teacher and educator. In this talk she speaks about the need for finding the balance to support children and young people with arthritis within school, and practical tips to help.
Rebecca Beesley has had Juvenile Idiopathic Arthritis (JIA) since she was ten. Her daughter also has JIA. And Rebecca is a volunteer with UK charity Juvenile Arthritis Research. In this talk, Rebecca shares her experiences about living with JIA through school, college and university; talks about how things are now in school; and provides information about the resources available to support children in eduction, and the educators themselves.
Luc Angevare is a young adult with an autoinflammatory disease. In this talk he shares his personal story about growing up and living with his disease, with a focus on school, education and his hopes for the future.
Polly Livermore shares the results of a survey of parents of children with Juvenile Idiopathic Arthritis (JIA) in the UK, which focussed on mental health.
Gabi Erbis talks about how her work supports the psychological and social impacts during transition from paediatric to adult clinics, for children and young people with rheumatic diseases.
Richard Beesley is a parent of a child with Juvenile Idiopathic Arthritis (JIA). He is also the founder and Director of UK charity Juvenile Arthritis Research. In this presentation he talks about the impact of JIA on the mental health of children and young people and their families, outlines the services currently available and explains the limited effectiveness and accessibility of them, shares resources that are available for families and health professionals to support mental health; and makes an impassioned plea for real action to make a positive difference.
Following the short Q&A David Gosar, a clinical psychologist, explains how important supporting mental health is and that it should be a priority in every clinic by every health professional.