I was happy to see Katherine Leon featured in The New York Times recently. Katherine, like me, is a graduate of the WomenHeart Science & Leadership patient advocacy training at Mayo Clinic. She told the Times of undergoing emergency coronary bypass surgery at age 38, several days after her severe cardiac symptoms had been dismissed by doctors who told her, “There’s nothing wrong with you.”
She isn’t alone. Many, many studies have shown that female heart patients are significantly more likely to be under-diagnosed – and worse, often under-treated even when appropriately diagnosed – compared to our male counterparts. This is especially true for women with her condition (Spontaneous Coronary Artery Dissection, or SCAD) that was once considered to be a rare disease.
Dr. Sharonne Hayes is also featured in the NYT piece; she’s a respected Mayo Clinic cardiologist, longtime SCAD researcher and founder of the Mayo Women’s Heart Clinic. (You can read their story here).
But almost as soon as the Times piece was published online, I was gobsmacked to see some of the reader comments coming in – especially comments from people like these: .
◊ Chris (New Jersey): “I work in an emergency room. No one’s symptoms are trivialized because of their gender. That is absolutely ridiculous.”
◊ KSK (Maine): “I am an Emergency physician. I am aware of bias in medicine against certain groups and I strive to avoid it in my own practice, but I feel articles like this confuse bias with diseases that are made difficult to diagnosis based on their rarity and/or unusual symptoms. Also worth noting is danger of over-testing, especially invasive testing. It’s a difficult problem for medicine, but I am not sure how much of a role gender bias plays.”
◊ John Wesley (Baltimore, MD): “This is OLD NEWS. 2003 was more than just 15 years ago, it was a generation ago in terms of having access to troponin testing , sophisticated heart scans, ultrasound at the bedside, and widespread certification and training in emergency medicine. Heart attacks in 40-year old postpartum women simply don’t commonly get ‘written off’ by sexist, uncaring doctors. I think it IS important to alert female patients that they can have heart disease at a young age, and we do need to fund more gender and age specific studies in medicine, but if you have symptoms like this woman had and you go to Emergency in 2019, you will get the care and diagnosis you need. It has nothing to do with medical school curriculum, physician ‘wokeness’ or mysogyny.”
◊ James Strickland (Wilson, NC): “This is an inflammatory article that has no basis for declaring there is gender bias. SCAD also is even rarer in men but does occur. If the diagnosis is missed on a man, can one claim gender bias? I think not.” . CAROLYN’S NOTE: Strickland’s comment could not be left alone, as these three readers quickly demonstrated:
Dr. Hayes might have been as dismayed as I felt by those gender-bias deniers – especially those who identify themselves as physicians (and apparently the kind who believe some variation of “If I don’t know about it, it does not exist!”)
When I objected on Twitter to these hostile reactions, she tweeted back:
◊ Nicole Miller (Connecticut):
◊ Holly (Ohio):
.“I sat in the ER for over 3 hours having a heart attack before the troponin results came back. And it took them another 2.5 years and another heart cath before they decided that it hadn’t just been an unusual type of clot but had actually been a SCAD (in 2014 and 2017 respectively). They still have so much to learn.”
Cardiologist Dr. Sharonne Hayes reinforced that last reader comment from physician/SCAD survivor Audrey on whether SCAD is actually “rare” at all.
Here’s how Dr. Hayes responded to this question from another reader who asked if SCAD is really as rare as we believe, given “so many personal stories of SCAD in the comments that perhaps it isn’t so rare? Where do the numbers on how rare it is come from?”
Dr. Hayes replied:
A: “Thank you! 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. It’s estimated that SCAD is responsible for 1-4% of heart attacks.”
Personally, I was heartened to read, despite the knee jerk defensiveness of some physicians listed here in response to this article, that there were a number of supportive comments from other docs like these:
♥ “All the SCAD ladies, put your hands up!“ (from The Wall Street Journal’s feature on how SCAD patients Laura Haywood-Cory and Katherine Leon succeeded in convincing Mayo Clinic cardiologist Dr. Sharonne Hayes to undertake SCAD research
♥ Watch this 5-minute video of cardiologist Dr. Sharonne Hayes explaining more on this exciting research, plus this 3-minute video from Mayo Clinic explaining SCAD and how survivors Laura and Katherine helped to kick-start this research on the diagnosis they shared.
♥ 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; over $800,000 has been raised so far.
♥ The American Heart Association’s official Scientific Statement on Spontaneous Coronary Artery Dissection: Current State of the Science
♥ Inspire’s WomenHeart online support groups, including specialty communities for SCAD patients or young cardiac survivors
♥ 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 (plus even a link to a Heart Sisters article listed on the report’s resource page!)
♥ Canadian women diagnosed with Spontaneous Coronary Artery Dissection (SCAD) are being recruited for a Canadian study based in seven cities nationwide, led by cardiologist Dr. Jaqueline Saw in Vancouver. Ask your cardiologist about participating in the Canadian SCAD Study.