Williams-Beuren syndroom


Our information is written for and by people around Williams-Beuren syndroom, so we know what we are talking about. We search for information, rewrite them to be understandable and share them. And share relevant news about Williams-Beuren syndroom by readable articles. In this way we want to inform families, make the feel empowered to educate the cure- and care-people or give them just that little bit of support.

Because if there is something important for families with a care-intensive1 child like Williams-Beuren syndroom, it is that the family remain upright. And that is what we, as community around Williams-Beuren syndroom, are committed to doing with heart and soul.

Het Williams syndroom is een aangeboren aandoening. De oorzaak is een microdeletie op chromosoom 7 ter hoogte van het elastine gen. Het syndroom komt voor bij ongeveer 1:15.000 pasgeborenen en even vaak bij jongens als bij meisjes. • breed voorhoofd • volle oogleden (vooral aan de buitenzijde) • scheelzien (strabisme) Bij kinderen en volwassenen met Williams syndroom dient men ten aanzien van de gezondheid op een aantal gebieden extra alert te zijn. De aandoening brengt op sommige gebieden een extra risico mee. Bovendien gaan kinderen en volwassenen met verstandelijke beperkingen soms anders om met 'klachten'. Regelmatige en gerichte controle kan zorgen voor een tijdige diagnose en dit kan ernstiger problemen op latere leeftijd voorkomen. Het gaat hierbij lang niet altijd om onderzoek door specialisten. De eigen huisarts kan al heel veel doen.

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Williams-Beuren syndroom

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More detailed sections on Williams-Beuren syndroom

We organize our information about Williams-Beuren syndroom in topics. You can browse our topics below. Below each topic you might find more detailed topics with information that might be of interest to you.

  1. ^
    • care-intensive: a lot of information is needed. A care-intensive person is somebody with a physical, mental or behavioural disability (or a combination thereof) and being seldom seen as Williams-Beuren syndroom must get the special cure or care that most people do not know about,
    • care-intensive: Because of the rare aspect of Williams-Beuren syndroom family members are often, (forced to be), the advocate that can help by being better informed as their cure or care providers,
    • care-intensive: a word that we came up with, with which we focus on the experience of the care with Williams-Beuren syndroom rather than the diagnostics.

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