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

Lisanne St. Onge Klute - Windless Dandelion Wishes

Elizabeth Ludwick - Thankful For Every Day

Suzy Mee - brainstem cavernoma

Meg - Thalamus Thoughts

Audrey Salas - Seize the Day

Sophia Scozzesi - I have a "brain" disease

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


As a permanent part of the site, we publish the experiences that you have had with cavernous angioma. Sharing and reading stories can be a way to give or get support, to share information, and to express feelings.

 View English stories

 View Español stories

Interested in submitting your own story? 

The Angioma Alliance website is adding to our Stories section. If you have been affected by cavernous angioma personally or as a family member or friend, please consider submitting your experiences for our site. Your story may include whatever aspects of the illness experience you feel have been important to you. This is not limited to, but could include the story of your surgery experiences, symptoms and diagnosis, recovery and disability experiences, parenting or spouse experiences, workplace or community issues, or health care provider/patient relationships.

We will publish the stories as they are submitted, editing for spelling but not for grammar. We will contact you if we feel we need to edit for medical accuracy, and will not do so without your permission.

To submit your story, please email it with your name to info@angioma.org. We appreciate your sharing a picture as well, but this is not required. Your story will be published with your name. Please let us know whether you would like your email address to appear with your story. This would allow readers to make contact with you with questions or to share their experiences. 

Also, please consider sending periodic updates to your story. These will be added to your original story with the date of submission. We encourage international submissions and can accept stories written in Spanish. If you are writing from outside of the US, it would be helpful for you to include your country somewhere in your narrative. Spanish stories will remain in their original language and we also may translate the story for inclusion on our English page.Thanks so much for your willingness to participate!

Connie Lee