I just read several recent posts that people have put on this site. My heart aches for everyone who is going through EC. I have been a member of this site for almost 3 years now and I love the support I received when my dad was sick. Please check out my website at www.frankies5k.com.
I also love www.caringbridge.org, which is a wonderful site for family and friends to go to and it keeps everyone up-to-date. I made a caringbridge site for my dad while he was sick and it was wonderful for my family as well as everyone supporting us.
I look forward to reading about people on this site with EC who are surviving and being healed. New meds are coming out everyday and it's just a matter of time before we finally grasp the right combinations in order to cure this terrible disease. I wish my dad had been one of the miracles, but knowing he is out of pain has brought be some comfort. Keep the positive thinking and God Bless!