Blundering along, having no idea what I’m doing! But at least it’s a start. My first blog post.

My goal is to ferret out all SCAD survivors worldwide to participate in the newly announced research studies at Mayo Clinic. Not the loveliest acronym, true; and fittingly enough, SCAD stands for a deadly condition: Spontaneous Coronary Artery Dissection.

One layer of a coronary artery tears, creating a flap of tissue that reduces or occludes blood flow through the creation of a clot. The blockage can cause angina, heart attack or sudden death. SCAD occurs predominantly in women. There is little research data to rely on and no true treatment protocol … yet.

The great mystery of SCAD is that survivors are struck like lightning by the tear. All of us report healthy lifestyles, weight, and few if any coronary disease risk factors. Many have our dissections around the time of childbirth. The newly hatched research is revealing an alarming number of healthy women involved in exercise at the time of dissection, unrelated to pregnancy.

The following video explains how social media helped generate willing research participants to jump start a pilot study at Mayo Clinic, which has now been expanded into two ongoing initiatives: a global “virtual registry” of up to 200 SCAD survivors and a DNA biobank of up to 400 patients and families.