AVMSurvivors was the first and only active and well-maintained platform I found, where I finally realized that I was not alone in my fight.
I spent the dark months after my diagnosis at age 22 (and subsequent craniotomy) very isolated, uninformed, and lonely. I found Ben’s Friends four months after my surgery, and my life has not been the same since. The website motivated to jump into the world of brain injury and vascular malformation advocacy, alongside friends I’ve made through it, and I hope to continue working to bring awareness and hope to those also plunged into the darkness. The resources and support are phenomenal, and the process of sharing experiences and giving/requesting information was extremely therapeutic in coming to terms with my experiences.