Naperville women persuade Mayo Clinic doctor to take their case
BY MARK TAYLOR May 15, 2012 9:39AM
Cheryl Crisman and Deb McGarry
♦ Spontaneous coronary artery dissection (SCAD) is an uncommon condition causing acute coronary syndrome, heart attacks and death that results from a sudden tear in the inside of a coronary artery blocking blood flow to the heart.
♦ The average age of SCAD survivors is 42, though men and women from ages 16 to 71 have suffered SCAD attacks.
♦ About 70 to 75 percent of known SCAD survivors are women.
♦ The prevalence, causes, mortality rate, prognosis, recurrence rate and best treatments for SCAD are unknown.
♦ About 70 percent of cases occur in women under the age of 50 and as many as one-third of attacks occur post partum.
Source: Sharonne Hayes, M.D., Mayo Clinic cardiologist and SCAD researcher
Updated: June 17, 2012 8:04AM
It was a reunion of women who don’t come from the same family and never went to school together or worked together.
In fact, it was a reunion of women who’d never met in person before.
Scanning the foyer of Naperville’s Marriott Courtyard Inn, the last thing anyone would have predicted uniting this group of 26 healthy-looking young mothers and wives was a heart attack.
Meet the women of the inaugural SCAD Survivors Reunion, a determined group whose lives were jolted and nearly ended by a Spontaneous Coronary Artery Dissection. SCAD is an uncommon and unstudied condition once thought incredibly rare. SCAD attacks occur when one or more of the main arteries to the heart dissect, or tear, causing internal bleeding, blood clots, heart attacks and often death.
There is no known cause or cure. No one knows how many SCAD attacks there have been, how many are fatal, the best standard treatments or the likelihood of recurrences.
But the self-named “SCAD ladies” are determined to find out. That uncertainty propelled several women to link up on an online patient support group, WomenHeart, operated by Inspire, a company that hosts online patient communities.
What brought them together initially was fear for their futures and their families, and a nearly complete lack of information about the ugly acronym describing their condition.
But in just a few years the SCAD ladies have accomplished what most people with rare conditions never do. They successfully enlisted a research physician from the renowned Mayo Clinic to conduct a pilot study of their members. Now cardiologist Sharonne Hayes and her Mayo Clinic colleagues are studying SCAD survivors in a clinical trial to learn more about the condition.
The SCAD Survivors Reunion included a May 4 meet and greet, along with a 5K walk/fundraiser the next day and a luncheon presentation from Hayes and the Mayo team updating the women on the latest information about their condition.
While the reunion was suggested by SCAD survivor leaders Katherine Leon of Alexandria, Va., and Laura Haywood-Corry of Durham, N.C., Chicago-area survivors Cheryl Crisman, 43, of Morris, Deb McGarry, 39, of Naperville and Blue Island resident Meghan Scheiber, 35, did the event planning.
Local survivors Mary Van Overloop, 37, of Hanover Park and Marlis Panagos, 46, of Woodridge, also attended. More than 175 walked and organizers raised $20,000.
“We’re a strong group of women and SCAD messed with the wrong ladies this time,” said Scheiber.
While each of their stories is different, there are commonalities. Crisman suffered two SCAD attacks in 2010, four months after delivering a baby.
Some SCAD survivors underwent in vitro fertilization, which may reveal hormonal correlations. Others have fibro muscular dysplasia, a rare condition that causes the narrowing of some arteries.
“When I returned from the hospital after my attack I went online and did searches and felt overwhelmed and scared, because all I could find was autopsy reports,” Scheiber said. “I had little hope. A year later I stumbled across Inspire and found there were other women out there facing the same issues.”
Brian Loew, CEO of Inspire, which hosts the WomenHeart Inspire support group and 200 other online patient communities, said it was not until recently that both the technology and levels of trust and privacy protection allowed SCAD-like initiatives to blossom.
“The SCAD ladies are an incredible story of women who found each other and not only discovered important information about their condition and connected to each other, but empowered themselves in ways never before possible across time and continents.”
Hayes, who is studying more than 200 SCAD survivors, said most have no known genetic or lifestyle risk factors that would predispose them to heart attacks, such as family histories of heart disease, smoking or obesity, which makes SCAD a tantalizing research topic.
Additonally, former Naperville resident Bob Alico launched the nonprofit scadresearch.org after his wife, Judy, died at age 51 in 2011, two days after suffering a SCAD attack. “The reason I did this is that I don’t want anybody to go through what I did. Boom! Out of the blue, the most important person in my life is gone and nobody knows why. It’s horrible.”