Member Blogs/Books/Stories

Reading the stories of others whose lives are affected by cavernous angioma provides comfort and offers the kind of information that can only come from experience.


A number of members have blogged about their experiences with cavernous angioma. If you’d like to add your blog to our list, please send the name and link to Angioma Alliance is not responsible for the content of these blogs.



Members have written books about their experiences as patients or caregivers (Caveat: these heroic stories are those of individuals who have had the most difficult cavernous angioma journeys. They are not to be construed as representing the typical experience.)

Interested in submitting your story?

Our stories are powerful. They help to convey the challenges and triumphs of living with cavernous angioma to those who have the power to help and offer comfort and connection to those in similar situations. We frequently include member stories in our newsletters and in social media postings. We also have a need for members who can speak to the media – having your story ahead of time would help us to make the best matches.

If you can offer your or your child’s story for publication, please email it to along with a high-resolution picture, preferably of you doing something you love.

Updated 2.5.21