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Wow! Thats really something. You obviously have a rare and unusual disorder. I'm just taking a stab in the dark but the National Institutes of Health does contain an "Office of Rare Diseases". They provide link to the National Organization for Rare Disorders. If you look on the right hand side of the page you'll find a contact number. Perhaps someone there might have an idea of what you have - its worth a try. http://www.rarediseases.org/ Good luck!

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