I’d never heard of the heart condition called Spontaneous Coronary Artery Dissection (SCAD) until I attended the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic in 2008. SCAD, I learned back then, was a rare and often fatal condition, seen mostly in young, healthy women who have few if any cardiac risk factors. But in a recent interview, cardiologists who specialize in this frequently misunderstood diagnosis added some surprising updates to what is now known about SCAD. . .
I once described this condition back in 2010 like this: SCAD involves a torn flap in the lining of a coronary artery that can block blood flow to the heart muscle, causing a serious heart attack or sudden cardiac arrest.
But as Mayo Clinic cardiologist Dr. Sharonne Hayes (founder of the Mayo Women’s Heart Clinic and a noted SCAD researcher) recently explained to a Best Health interviewer, most SCAD patients do not actually have a flap from a torn artery, but a bleed or a split called an intramural hematoma.
That may help to explain why so many physicians over the years have dismissed cardiac symptoms in young, healthy-looking SCAD patients that don’t fit the “old fat white guy” profile over the years, a reality that has resulted in up to 80 percent of SCADs likely being missed. As Dr. Hayes adds:
““I have sometimes described the dissection as like a blister within the layers of the artery. It can hurt as the layers of the blister split and the pressure builds up like a bruise. If it fills up and bulges enough, it can block the flow of blood going past it or, if the pressure builds up, it can burst open, leaving a free layer of artery that can also flap around to obstruct blood flow.
I used to describe this condition as“rare”, until I heard Dr. Hayes say that physicians now believe it’s not that rare after all – but rarely appropriately diagnosed. Dr. Hayes adds:
“SCAD is not rare. It’s ‘uncommon’ as a cause of heart attack overall. It is the #1 cause of heart attack among women who are pregnant or have recently given birth, and women under age 40.”
I used to describe this condition as dangerous and usually fatal. For example: “It used to be, and sadly remains in almost 70% of cases, a deadly condition often only correctly identified post-mortem during autopsy.”
But Dr. Hayes now believes we have reason to be optimistic about this unusual cardiac event. Latest clinical data show that SCAD survival is now estimated to be in the 93-98 per cent range. That’s higher, Dr. Hayes notes, than the average survival for an acute heart attack like mine.
Most importantly, doctors now know far more about SCAD – and are learning more every day – compared to what was known just a decade or so ago.
We’ve come a long way, baby – and this particularly applies to understanding SCAD. Dr. Hayes described those early days for SCAD patients in that Best Health interview:
“I founded our Mayo Women’s Heart Clinic in 1998. And back then, women were just being ignored. They had classic symptoms and wouldn’t even get an ECG. That’s improved hugely.
“The challenge still is this younger group of patients, some of whom go in literally saying, ‘I have an elephant on my chest, and pain radiating to my jaw and down my left arm, and I threw up.’ You cannot make up more classic heart attack symptoms, yet they are sent home.
“Some of these women have been traumatized by not being taken seriously. As important as understanding this condition is validating the experience of these women, whether they were ignored, misdiagnosed or referred to a cardiac rehabilitation program that was tailored more to a post-bypass 80-year-old than a 35-year-old.”
“And then they have their doctors scratching their heads and saying, ‘Aren’t you interesting? You’re the first SCAD case I’ve seen!’ Nobody wants to be an ‘interesting’ case.
“I would consider myself among the SCAD experts in the world, and I still don’t have all the answers”
She describes SCAD patients as being “like the square peg in a round hole.”
“If you’re treated like an oddity or a fragile egg that could break any minute, because you have symptoms that a lot of cardiologists aren’t used to dealing with, it’s very frustrating and scary.”‘
Katherine K. Leon, whose SCAD heart attack occurred at age 38 just six weeks after giving birth to her second baby, could have been the poster child for that “too young, too fit, too well” stereotype of a young woman who is NOT having a serious heart attack – despite her crushing chest pain:
“I didn’t smoke. I didn’t eat fatty foods. I exercised. Why in the world would my body just fail? I’ve been told so many times it was just bad luck or a fluke. Nobody wants to hear they’re a fluke.”
So why would cardiologists and SCAD researchers like Dr. Hayes now be feeling more optimistic about improving diagnosis and treatment of future SCAD patients? A number of emerging advancements are cited in the article:
♥ Vancouver cardiologist Dr. Jacqueline Saw at the University of British Columbia is doing important SCAD-specific research. She and her international team recently discovered a series of common genetic factors among SCAD patients that could help identify why the coronary artery weakens and tears, and a classification system to analyze coronary angiograms (which help locate the tear and its measurements). Her team has also identified risk factors between SCAD, Fibromuscular Dysplasia (FMD)* and migraine headaches
♥ At the University of Ottawa’s Canadian Women’s Heart Health Centre, cardiologist Dr. Thais Coutinho offers cardiac rehabilitation programs dedicated to providing peer support for women with SCAD to regain confidence in their bodies. Dr. Coutinho explains: “SCAD can be something that can be overcome, or it can be something that can give you PTSD. We make sure we take care of our patients’ mental health just as carefully as we take care of their heart.”
♥ And at Mayo Clinic, Dr. Hayes has created an international virtual disease registry of SCAD patients (the largest in the world) plus a DNA biobank to help identify potential causes, best treatments and the risk of a repeat SCAD diagnosis.
Finally, I want to mention here the SCAD Alliance, a non-profit organization and network of SCAD survivors, researchers and clinicians whose unique aim is to “empower each SCAD survivor with an accurate diagnosis, superior outcome and answers.” Their SCAD Warrior App (developed with help from physicians and psychologists from the University of Colorado, Stanford School of Medicine, the SCAD Alliance and Massachusetts General Hospital) can be downloaded here. Their comprehensive list of online resources includes support for both SCAD patients and family members. And their 2014 White Paper, “The Vital Role of the Emergency Department in Improving Outcomes of Spontaneous Coronary Artery Dissection” should be required reading for all who work in Emergency Medicine (contributors include Drs. Leanna Wen, Malissa Wood, David Adlam, Esther Kim and James Feldman).
Q: Have you or someone you know been diagnosed with SCAD?
NOTE FROM CAROLYN: I wrote much more about SCAD and other cardiac diagnoses in my book, A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press). You can ask for this book at your local bookshop (please support your neighbourhood independent booksellers!) or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).
-A Zebra Among Horses – guest post by SCAD survivor Laura Haywood-Cory, who described her young heart patient self as: “a freak, an anomaly, a 40-year-old woman in a cardiac rehab class of men in their 70s.”
-Fibromuscular dysplasia * (FMD) has been linked to SCAD. This diagnosis is most common betweien the ages of 40 and 60. Over 90% of patients with FMD are women. Find out more from this Cleveland Clinic site.
-Wall Street Journal article called “When Patients Band Together: Social Media Spurs Mayo Clinic Research”
-SCAD Ladies Stand Up: Stories of Patient Empowerment, the special report from Inspire.com and the WomenHeart online support community. It features a number of interesting first-person accounts from SCAD survivors plus an introduction written by cardiologist Dr. Sharonne Hayes (and even a link to a Heart Sisters article about SCAD listed on the report’s resource page!)
-SCAD Research is a non-profit fundraising organization, started by Bob Alico, whose wife Judy died from SCAD. When Bob asked the cardiologist what had caused the SCAD that so quickly took Judy’s life, the doctor said he would probably never know the cause because little was understood about SCAD. In the midst of his grief, Bob decided something needed to be done to find answers. He learned that Dr. Sharonne Hayes had started researching SCAD at Mayo Clinic, and also that finding enough funding for this research was critical. In 2011, SCAD Research was established to help fund promising studies.