Living with the metabolic disease such as cystinosis is all but simple. Even more so when you are young and you find it difficult to talk about things surrounding your illness. The condition, which affects various organs due to an accumulation of the amino acid cystine, is especially difficult to understand at a young age. In addition to the patients' personal questions, they also find it difficult to answer questions from their peers.
Talk with confidence
To meet this particular need, care providers from UZ Leuven, amongst others, have had the 'My Cystinosis story' website developed in consultation with patients. This helps young cystinosis patients to talk abundantly about living with the condition. Via the tool children prepare an online talk, with the encouragement of a presentation coach. It teaches patients to talk with confidence about their illness, either at home or in the hospital. The children are also given a doll to take home, to make it easy to point out the organs affected by their condition. It also important to realise that the children are more than just their illness: this tool allows them to prove that to their classmates or friends.
Curious about the tool?
Check out https://www.mijncystinoseverhaal.nl. The website is available in Dutch, French and English.
*The website has been developed by CHIESI SA/NV in collaboration with Belgian experts in the field of nephropathic cystinosis from UZ Leuven, UZ Gent, UCL, CHU Liège, UZA, the patient association for nephropathic cystinosis (https://cystinose.nl/) and the design agency Ideate.