¿Qué consejos darías a una persona que acaba de ser diagnosticada con Síndrome de Stickler?

Consejos de personas con experiencia en Síndrome de Stickler para personas que acaban de ser diagnosticadas con Síndrome de Stickler

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Get as much info as you can find and force your doctors to read it. Most have never heard of it, but they're too proud to admit they know nothing. Simple things like the fact that steroids increase your already high risk of glaucoma will get missed unless you are your own advocate.

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