Williams-Beuren syndroom

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We collect questions often asked by people around Williams-Beuren syndroom, so you can search if your question is already asked. Each new question that is asked within our community is answered by a forum of experts with different expertises. We add links to helpful information, rewrite them to be understandable and share them 1. In this way we want to inform families, make them feel empowered and give them just that little bit of extra support.

Because if there is something typical for families with a care-intensive2 child like Williams-Beuren syndroom, is that you will have a lot of questions. And we all want that you can remain upright, by showing that no question is too complicated or not worth asking. 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.

More detailed sections on Williams-Beuren syndroom

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

  1. ^
    • when the person that asked the question has given permission to share this. 
    • Sometimes, on request of the person that asked the question, we will change the names to anonynymous information to shield the privacy of your community member
  2. ^
    • care-intensive: a lot of questions (and answers to these) will be 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 there is a lot of unknown's,
    • care-intensive: Because of the rare aspect of Williams-Beuren syndroom family members are often, (forced to be), the advocate that needs to ask these questions for the better of their family member (or themselves!),
    • 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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