Ok, I take that back, they are doing some.
I just don't understand why no one wants to find out why this happens. Everything I read talks about how PTC is rare and blah blah blah but it effects 1 in every 100,000 people. So how rare can it be? Still, no one seems to CARE about it. Some Dr.'s don't even know about it.
The Willsters and I are talking about planning a walk to benefit the IHRF. Maybe I will meet others with PTC and we can talk about how much it sucks.
One useful tidbit, the website said that my new found hatred of soda was from the Diamox. They said it would happen with ALL carbonated beverages. Does this mean no champagne on New Years? Travesty.
http://www.ihrfoundation.org/ There's the foundation. You should donate. They also have some cute stuff in their shop. Even little doggie shirts! They use the real name (Intracranial Hypertension) so their slogan is I Hope which I think is cute.
http://www.columbian.com/news/2010/jan/10/vancouver-family-combats-rare-hypertension/ That is a link to a very interesting article about how much this shit sucks. It was actually written by the people who started the registry.
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