For the information package, professor Ann Swillen, clinical remedial educationalist in the UZ Leuven centre for human genetics, started from her own experience. For years she has been seeing parents with a lot of questions about their child's diagnosis of a rare genetic disorder at her consultations. “This can range from questions about what the disorder consists of to what the impact will be on their family and the future. Will their child ever be able to live independently? How can they explain this to their child and to its brothers and sisters? The threshold to start this conversation is often too high, so we want to give families a push in the right direction to express their questions and emotions", professor Swillen explains.
Talking without taboo
The information package consists of two parts. During the consultation children can piece their own unique clinical picture together with colourful jigsaw pieces. The pieces represent both physical characteristics and characteristics connected to thought and emotions. The jigsaw makes an end to the lists, because not every patient with a specific rare genetic disorder will have the same symptoms. At home, the conversation can continue, based on questions in the accompanying family book, which consecutively puts the young patient, the brothers, sisters and the whole family centrally.
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