Member Blogs, Books, and Stories


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

Deb Brandon - The Bloody Brain

Dhangle - bad brain beautiful brain

Kristen Halvorsen - Of Brains and Blessings

Erin Loughran - My Invisible BFF

Jamie Twinney - Cavernoma Chronicles vlog

Jamie Twinney and Erin Loughran - Cavernoma Chronicles special discussion edition

Elizabeth Ludwick - Thankful For Every Day

Suzy Mee - brainstem cavernoma

Meg - Thalamus Thoughts

Audrey Salas - Seize the Day

Erin Woodall - Dizzyland


Maggie Whittum - The Great Now What


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.)

Eileen Benthal - Breathing Underwater: A Caregiver's Journey of Hope

Sacha Bonsor - Dipped Into Oblivion (available Used)

Deb Brandon -  But My Brain Had Other Ideas: A Memoir of Recovery from Brain Injury

Les Duncan - Brain Storms: Surviving Catastrophic Illness (available as eBook)

Mimi Hayes - I'll Be OK, It's Just A Hole in My Head

Brian Nice - My Point of View (photography after a brainstem hemorrhage)

Duke Pieper - I'm Alive Courage, Hope, and a Miracle

Bonnie Sherr Klein - Out of the Blue: One Woman's Story of Hope, Love, and Survival (available Used, Canadian title is Slow Dance)

Mark Seymour - Since I Was Dead: A Memoir of a Pontine Hemorrhage

Brian Wagner - Sometimes It Does Take a Brain Surgeon


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 info@angioma.org along with a high-resolution picture, preferably of you doing something you love. 


Updated 5.16.20