At age 38, after the birth of her second son, Katherine K. Leon had a heart attack. Atypical? Indeed. This young, physically fit woman had no risk factors associated with heart disease. She had a SCAD heart attack.
A Spontaneous Coronary Artery Dissection, SCAD is an extremely serious and often fatal condition. Here’s what happens. Coronary arteries, the arteries that feed the heart, have walls with 3 layers. With SCAD, the wall develops a tear, causing blood to flow between the layers of the wall. Pieces of the arterial wall can act as a flap or block the artery by clotting. The clot or flap stops the flow of blood to the heart muscle resulting in a heart attack or even sudden death. “Starved heart = dead tissue,” Katherine explains. Eighty percent of the people suffering from SCAD are women.
“It’s Not Your Heart”
Katherine’s SCAD heart attack happened on April 30, 2003. Told repeatedly by doctors, “it’s not your heart” catheterization and emergency double bypass surgery occurred Monday, May 5. In other words, Katherine did not receive essential treatment for her condition for 6 days. More damage to her heart occurred because of this.
Thankfully, Katherine survived. Describing her transformation from patient to advocate to initiator of research,
Katherine wondered, what caused this to happen to the walls of her coronary arteries? No one could answer that question. Told that what happened to her was rare and that no one knew other survivors, she discovered that, “No [one] I was meeting had ever even heard of SCAD.”
“What I kept hearing was, ‘There is no research because there isn’t anything to research. You either die, need a heart transplant, or are lucky like you.’ I was shocked and appalled by the unscientific attitude of these medical professionals.”
Katherine’s 6 Year Search For Other Survivors
Being told to “get over it, you’re lucky to be alive,” only stirred Katherine to action. Is there another young, healthy mother out there, surviving a SCAD heart attack?
No one seemed to know. She started to look with “zero support.”
“I didn’t find a single other SCAD survivor until January of 2007.”
She went online but it took 4 years to find another survivor. When she did, she started to ask questions and document what had happened to others. By fall of 2009 she had found 89 survivors worldwide.
Realizing that “researchers want diagnosed bodies to study,” Katherine brought her data to the Women’s Heart Science and Leadership Symposium at Mayo Clinic in 2009. There she pitched her idea to Dr. Sharonne Hayes.
“As soon as I got home from Mayo, I posted…about Dr. Hayes’ positive reaction to…SCAD research…sent…my…proposal with data on the 22nd. She replied on the 28th. And by November 2, I was getting commitments from women…to participate.”
Dr. Hayes conducted a pilot feasibility study, started a virtual registry, and by 2011, launched a DNA biobank.
“From there, it has been a blur! Amazing progress! New developments all the time, makes it exciting.” Genetic research is underway through Mayo’s DNA biobank. Researchers are exploring SCAD heart in connections with hormonal changes, autoimmune disorders, lupus, sjogrens and connective tissue conditions, like Ehlers Danlos and FMD.
“SCAD Isn’t Rare…It’s Rare to Find a Survivor!”
But the most exciting fact is that now there is professional interest. “Doctors want to solve this mystery heart attack, not dismiss it as ‘too rare’ to matter. It wasn’t overnight!” Katherine states. But years of effort are paying off.
“[It] seems like SCAD heart is everywhere. [There’s a] ripple effect via Internet/Google[that] means new survivors and those diagnosed long ago, meet. Survivors [are] speaking out in media. Their coverage creates more. Doctors refer and consult; diagnose more SCAD heart. And repeat!”
Now Katherine has engaged in another initiative with Rachel Douchette.
While putting her children in the car for school, Rachel felt “sudden crushing chest pain.” A typical morning in 2011 became an emergency.
“My MI (myocardial infarction or heart attack) was dismissed initially because I was too young, [about to turn 36] too healthy and female. Bias and lack of awareness of SCAD caused delay in diagnosis and treatment…I survived with emergency CABG.” (Coronary Artery Bypass). Once a survivor, I needed to help increase awareness of SCAD and that heart attacks happen to young women. I shared my SCAD story with Heart Massachusetts and then as Massachusetts Regional Go Red spokeswoman.””
Katherine and Rachel met online in the same WomenHeart Inspire support group where Katherine started reaching out to others in 2004. They kept in touch and discovered they shared the same mission founding SCAD Alliance. The goals of their organization are first, to assist and accelerate interdisciplinary collaborations in order to expand and better the care and outcomes of SCAD.
“Collaboration is fundamental to the SCAD Alliance philosophy,” Rachel states. The logo for the organization is a “4-leaf ‘lucky’ heart logo that represents the torn artery we must overcome with support from family, health partners, researchers.”
To create this collaborative strategy they have built a team to study SCADs from all angles and integrated disciplines.
Second, SCAD Alliance wants patients to be empowered. “We are committed to improving lives of SCAD heart patients and families through education, advocacy, research and support,” Rachel said. Finally, SCAD Alliance wants to spread awareness of SCAD.
Long-term Impacts of SCAD Heart
One powerful reason for this push forward is “We are seeing long-term impacts of SCAD now. Heart failure, arrhythmias, serious consequences years after the event…Or, I should say, at the time of event. Many have severe damage and struggle with heart failure from year one,” Katherine states. Rachel agrees that it is important that heart attack symptoms “are not dismiss[ed] in healthy people. The medical community must have the awareness to consider SCAD.”
“SCAD Alliance has the vision of the day when no one endures the heartbreak of SCAD heart.”-Rachel Douchette
Based on the #HCHLITSS tweet chat March 27, 2014.