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! ... -angiomas/

Happy reading and writing! :)

Best wishes,
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/
Posts: 1094
Joined: Mon Sep 27, 2010 12:38 am
Location: Oregon

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
User avatar
Connie Lee
Founder, Angioma Alliance
Posts: 448
Joined: Sat Sep 25, 2010 2:41 pm
Location: Norfolk, Virginia

Return to Living With Cavernous Angioma

Who is online

Users browsing this forum: No registered users and 5 guests