Welcome Stephanie,
I'm glad you found our support group, it's a wonderful group of understanding and helpful folks. As Annekat said, there are also some facebook groups if you research online. Even though I don't post often, I still check in often and feel like this group is one of my anchors in living with this disease, because like you, there is no one else that I know who has this disease that lives near me.
We must let go of the life we have planned so as to accept the one that is waiting for us.
Joseph Campbell
When sleeping women wake, mountains move.
Chinese proverb
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