Saturday, January 7, 2012

First Splash

I am an Orphan..no...really. I have an Orphan disease called Langerhan's Cell Histiocytosis. It is called an orphan disease because it is so rare, it does not qualify for any Federal Grants to conduct research. And at times..(a lot lately) I start feeling very lonely, I do not understand everything about this disease, so it makes it very hard to explain to others.
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1 comment:

  1. syatesJanuary 9, 2012 at 9:19 AM

    Bless you for doing this. Opening up yourself and letting everyne else experience what you are going through. What a great way to raise awareness for LCH and Histio in general!

    Hugs~
    Shannon

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