Storie di esperienza

After the diagnose


Na de diagnose Rubinstein-Taybi Syndroom, kan het zijn dat je in eerste instantie behoorlijk schrikt. Al waren er wellicht vermoedens dat er iets niet goed was, de definitieve diagnose kan hard aankomen. Vragen die kunnen opkomen zijn: 'Waar kom ik meer te weten over dit syndroom?', 'Hoe ernstig is het?', 'Wat is de levensverwachting?', 'Hoe moet dat met de verzorging?' en 'Wat betekent dit voor het leven van mij en mijn gezin?'.

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