Health Stories Project Blog - Four Generations of CMs

Discussions of issues related to living with cavernous angiomas

Health Stories Project Blog - Four Generations of CMs

Postby PattiG » Wed Apr 18, 2018 1:16 pm

While browsing for sites welcoming patient stories, I was thrilled to find this!
https://healthstoriesproject.com/four-g ... -angiomas/

Happy reading and writing! :)

Best wishes,
Patti
Multiple CMs throughout my brain. I have had 4 bleeds requiring surgery between 1987 and 2010. Locations of craniotomies have been: L. parietal, R. parietal, L. temporal and R. thalamus.
Cavernous Malformations & Central Pain Syndrome: http://support.stroke.org/site/News2?ne ... 1&id=17759
A Day in the Life of CPS @ http://www.youtube.com/watch?v=8ed6hazqNYU&feature=plcp
PattiG
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Re: Health Stories Project Blog - Four Generations of CMs

Postby Connie Lee » Tue May 29, 2018 12:08 pm

Thanks, Patti. I just wanted to follow-up with an update on the story. Julie DeMichiel has since joined our Board of Directors. She hosts a wine tasting every September in Torrington CT that benefits Angioma Alliance. Julie's mother passed away a few years ago. Just this year, Aria, the baby, had brain surgery for a hemorrhaging lesion in the temporal lobe. She is doing well. Finally, the family has welcomed another baby, a little boy, who does not have CCM.
Connie Lee
President and CEO, Angioma Alliance
17-year-old daughter with CCM3 mutation who has had 4 brain surgeries, T2-L3 spinal fusion
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
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