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.
A Central Pain Syndrome Survivor's Perspective http://strokeconnection.strokeassociati ... rspective/
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
On this journey since 2000, when my infant daughter was diagnosed.
To support Angioma Alliance, visit http://www.Angioma.org/Donate.
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Connie Lee
Founder, Angioma Alliance
 
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