Raising awareness about this rare and untalked about condition is something I am very passionate about.
The Angioma Alliance is an organization by and for those affected by cavernous angiomas and their loved ones, health professionals, and researchers.
Like many, many others, I had never heard of this condition prior to my diagnosis.
I suffered with headaches throughout my entire life. I always thought they were due to stress and never really thought much else of them. I just thought it was semi-normal thing to deal with.
Clearly, it was not. At age 25, after my health deteriorated severely over the course of a few days, and an emergency trip to the hospital resulting in a troubling CT scan, it was discovered that I had been born with a cavernous malformation in my brainstem.
For more of my personal story and recovery journey, please check out my previous brain surgery posts.
Now, you can bet, that I always encourage friends and strangers who suffer with horrible headaches to go and see a neurologist. You never know what “just a bad headache” can actually be!
What is an angioma or cavernous malformation?
Did you know 1 in every 500 people have a cavernous angioma (also known as a cavernoma or cavernous malformation)? For most people, a cavernous angioma remains silent and dormant.
Unfortunately, we have no way to predict whose cavernous angioma will become active and cause a brain hemorrhage. Once the lesion hemorrhages, it is “awake” and can hemorrhage again.
Brain surgery remains the only treatment and isn’t an option for many because of the danger. Learn more: http://www.Angioma.org.