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Which advice would you give to someone who has just been diagnosed with Noonan Syndrome?
See some advice from people with experience in Noonan Syndrome to people who have just been diagnosed with Noonan Syndrome
find any and all information you can about NS. seek out others on facebook and groups dedicated to NS and rare diseases. in hindsight I would have gotten involved sooner. instead of wallowing in self pity and feeling my life had ended. little did I know it had just begun. I was overwhelmed with information. take one symptom u have at a time and learn about it. reaching out to people is very important. don't try to handle it on your own. I sought out therapy because I was loosing my grip on sanity trying to deal with it on my own
Posted May 9, 2017 by Bree 1200
Stay strong and don't stop asking questions and seeking 2nd options
Posted May 19, 2017 by Tanya 2000
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Posted Dec 31, 2018 by Lachlan croucher 3000
