I love the emails, the facebook comments-just when people reach out and say, "Hey, I'm fighting too."
It's pretty cool.
I want to thank Patti, who's letting me share this with you:
You can read more about Patti and her experience in this article at the American Association of Neurological Surgeons.
She also made this video. I love this. I do:
Thanks, Patti. And if anyone else out there has anything they'd like to share, I'd love to hear from you too!
I think it's great that so many people have made their stories public. Of course, like everyone else, I had never even heard what a cavernoma was. My husband wrote it down because we kept forgetting what it was...all we were thinking was 'will I live!?'.
ReplyDeleteI really hope enough of us blogging/documenting/talking about this can raise awareness about cavernous angiomas.
You know, if just one person who's looking finds us...well, then it's all worth it. :)
ReplyDeleteIt's incredible that after all that Patti has been thru, she still has the energy and perseverance to tell her story, to be heard and to be recognized as a spokesperson for neuro-vascular disorders, never giving up, never quitting and never allowing us to be classified as an orphan disorder.
ReplyDeleteI applaud you Patti.......SERIOUSLY!
Agreed. She's amazing. Just amazing, and wonderful.
ReplyDeleteTHANK YOU, Mike and Kelley for your very kind comments! :)
ReplyDeleteAnd Callebresella, I too carried around a scratch paper w/my original diagnosis, "arteriovenous malformation" (back when CM's were called cryptic AVM's), not having a clue what it meant, but being scared out of my wits!
Keep up w/your great blogs and Mike, "thank you" for our 20 yrs. of friendship/survivorship!
Patti