"We are all broken. That is how the light gets in". Ernest Hemingway

Modern medicine continues to focus on treatment instead of prevention.  Thankfully there are treatments available to the survivors of brain AVM bleeds such as embolization, surgery, and gamma knife (stereotactic radiosurgery or 'SRS") radiation treatment. However, there can be devastating effects, even morbidity, once a bleed occurs. The problem is there is NO STANDARD OF CARE, NO DIAGNOSTIC, NO NEUROLOGICAL EXAM that provides guidelines for a patient to be referred for an MRI (magnetic resonance imaging) with contrast. Especially for young children who would have to be sedated for the imaging, parents and doctors are understandably hesitant to recommend an MRI and that consideration is in addition to the cost of such screening. No standard of care is simply UNACCEPTABLE and putting everyone through an MRI with contrast is IMPRACTICAL.

So how can we change this and why us?

Every parent of an AVM warrior or angel is haunted by the thought "how could I have known?" Since everyone can't have a brain MRI with contrast as a standard practice, we need to find a way to identify who should be referred for imaging. 

cLIFE is setting out to accomplish this goal by allowing the AVM community to share the thoughts that keep repeating in their minds-maybe it was the autism diagnosis, or the birthmark, or the brief NICU stay, or the unexplained nose bleeds, etc.-compile and analyze them for trends that will give us clues about how AVMs manifest clinically in patients. This is just a first step. A step that will prevent untold grief and pain to another family whose life didn't have to face such devastation. The interventions that doctors take in an emergency setting to save a life can be performed BEFORE A BLEED A HAPPENS, when an AVM is early identified, to keep the soccer player on the field and the snowboarder on the mountain. To allow for dance lessons and a walk on the beach. Or even more basically, to allow them to see, and hear and swallow and speak. 

Why now? Because it can't wait any longer and because we are passing the storm.

Why us? Because we want everyone to know what we and so many others learned the hard way. Because we are part of the community, not an outsider. Because we know so many people want to share their thoughts on what they now think could have been signs of the AVM.