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Waardenberg's (Waardenburg's) Syndrome

Gina

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Hello. I have Waardenberg's (the correct spelling). I am interested in talking with others who have it too. Feel free to e-mail me. I have white forelocks, premature greying and eyebrows that used to grow together when I was younger. I also have endolymphatic hydrops. I have been on the "hydrops diet" for a few months. It seems to be helping a lot. But not completely. I still have dizziness/vertigo attacks without warning occasionally. Usually going down stairs and in automatic carwashes. I am interested in learning about any "alternative" treatments for this condition. The doctor believes I inherited the gene from my father. It's hard to say now since he is deceased. He never told anyone about any problems ... but he was a proud man and probably wouldn't have mentioned them anyway! I had noticed he had some hearing and digestive problems. Anyway, feel free to contact me about the syndrome. I have been wanting to form a support group for Waardenberg's by way of e-mail. Who, knows ... I might even create a homepage about it if there is enough interest. Thank you, -Gina

 


   
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