Jeanne
Liz, I would love to chat with you about this disease and what the future holds for my daughter. Would it be possible to do this through email instead of using this board? My email address is: jeannelocke@msn.com I have so many questions and you and your daughter may hold my answers, as I have had no luck in getting any "real life" help from any doctors. I hope that you will contact me at my email addrss soon. Thanks for replying! Jeanne