A child with cystinosis often finds it difficult to explain living with cystinosis, while other children like to ask questions. Discuss with your student whether and how he or she wants to talk about cystinosis.
The purpose of this website is to give children the confidence that they are so tough that they can share about what they are going through. To provide some extra support for that, it is possible to request presentation coaching. Veronique Hoex is a presentation coach that helps children with cystinosis share their story with confidence. Children can ask about this at the hospital.
This website allows a child to make their own presentation about his or her own life with cystinosis. The information in this presentation is aligned with their peers. A child creates an account on the website and chooses which topics he or she would like to discuss or not. A child can add photos to personalise their story. The own presentation can be downloaded as a PDF and as a PowerPoint document.