Patient Stories
Read stories shared by Alliance to Cure Cavernous Malformation members about how they have coped with cavernous malformations.
Blogs
A number of members have blogged about their experiences with cavernous malformation. If you’d like to add your blog to our list, please send the name and link to info@alliancetocure.org. Alliance to Cure Cavernous Malformation is not responsible for the content of these blogs.
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Corey Diggins – CDigsBrainstyle
- 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
- Meg – Thalamus Thoughts
- Audrey Salas – Seize the Day
- Erin Woodall – Dizzyland
Documentaries
- Eloquent is our first-ever documentary about patients and families dealing with the ups and downs of a cavernous malformation diagnosis.
- Maggie Whittum – The Great Now What
Books
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 malformation 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)
- Kawan Glover – Favor: How Stroke Struggle and Surgery Helped Me Find My Life’s Purpose
- Tymiak Hawkins –Becoming the Light: Navigating Darkness After A Stroke
- 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)
- Rachel Paverman – To The Abyss
- Heather Rendulic – Head Strong Through Live, Love, and Brain Surgery
- 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 malformation 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.
We would be happy to help you write your story. The easiest option is to complete the form linked here. We will take the information shared, write it up, and get your approval before moving forward.
You can also email your story to Linsday@alliancetocure.org along with a high-resolution picture, preferably of you doing something you love.
Updated 2.22.24
