Que conselhos você daria a uma pessoa que acaba de ser dignosticada com Cistinose?

Veja alguns conselhos de pessoas com experiência em Cistinose para as pessoas que acabam de ser diagnosticadas com Cistinose

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Be strong, don't get depressed. Listen to advice from others in the know. Take your meds, go to your appointments and learn everything you can about your disease. Most important, get involved with other people who have Cystinosis like you. You are special, you are a Cystinosis Warrior!

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