BIRMINGHAM, AL (WBRC) - In 2003, Katherine Leon had just given birth to her second son. What should have been a happy time for her family turned into a nightmare when she was diagnosed with spontaneous coronary artery dissection or SCAD, and had to undergo emergency open heart surgery. SCAD is the number one cause of heart attack in women under the age of 50, but at the time, Leon had a difficult time convincing doctors that something was wrong.
“Every cardiologist I spoke with was of the opinion that SCAD didn’t matter," Leon said. “Maybe they remembered one line about it in a textbook from medical school, but the consensus was to get over it and move on.”
Leon did eventually recover from her SCAD, but she didn’t move on. Despite dealing with major complications after her SCAD- surgery to repair her sternum, a detached rib, a hysterectomy- she was determined to raise awareness about SCAD and help start much needed research. She became active in WomenHeart: the National Coalition of Women with Heart Disease and connected with other SCAD survivors in the online community. Leon compiled their stories, then shared them with Mayo Clinic’s SCAD expert Sharonne Hayes, M.D. This exchange led to the establishment of the first virtual SCAD registry and DNA biobank at Mayo Clinic and eventually, an expanded SCAD research project currently underway.
Leon felt like she survived her SCAD for a reason and her advocacy work soon became full time. She discovered other SCAD warriors, not just in the United States, but around the world, and their combined energy has led to huge advances in SCAD awareness and knowledge in the last decade.
“There’s a strength inherent in SCAD survivors,” she said. “It’s a horrible experience, but if you’re able to get through it, it can generate instant advocates.”
In 2013, Leon co-founded SCAD Alliance with an ambitious mission, to support everyone involved in the SCAD experience, educate those on the front lines of medicine and extend the research. The progress she’s been able to help facilitate has been incredibly gratifying. Earlier this year, the American Heart Association released a scientific statement on SCAD, a milestone of collaboration among SCAD doctors and researchers, including SCAD Alliance’s scientific advisory board. Leon said advances like this give her hope that future SCAD patients will have an easier road to recovery.
“Maybe there’s a way to screen people for SCAD or catch it early,” Leon said. “Hopefully we’ll get there one day.”