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- By arielyn76
- Posted May 6, 2009 at 12:05 pm · 50 replies
- Shared with the public
Hello there. I am wondering if any one has this disease or knows of someone who does. I have yet to find anyone to talk to about this. The only information about this is pretty much the same things said over and over. I know it is a very rare disease but I am just hoping there is someone out there I can talk to about this.