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Which advice would you give to someone who has just been diagnosed with Waardenburgs Syndrome?
Advice for the newly diagnosed with Waardenburgs Syndrome, written by people who have lived it. What they wish they had known on day one.
Welcome to the WS family.
Posted Jun 2, 2017 by Misheal 2240
Translated from portuguese
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Good. incredibly was my case.. I found nothing.. with the lord for Google I wonder how many people out there have the syndrome and do not know.. my ancestors did not know about.my family ( many have mild symptoms of the syndrome ) and I was the first to discover that we are waanderburg , I am proud of my family, is to be who I am.. when I found out I was in shock seeing people like me , there is not much information about the syndrome , many doctors don't even know what it is.. the diagnosis and almost Impossible if you don't run behind.. even then I knew that I had rims of the eyes and nothing more.. good as far as I know we are "normal" but more prone to early aging , prone to deafness total or partial finally diagnoses treatable , then we can go on our happy lives knowing that we are special ,when I look for someone with the syndrome I am delighted because you seem to be angels, with blue eyes and bright hahaha , don't be afraid to have children , for those who don't know we have a 50% chance of passing to our seed genetics ( children), but it is the choice of God..my children no longer have my grandchildren can have in my opinion is a feature of the lovely family of course, that sometimes entails some unpleasant symptoms in the case of deafness, but nothing that the cochlear implant can't solve.. :D
Posted Oct 13, 2017 by Nayara 200
