Is SCAD rare? Or just rarely diagnosed correctly?

~ Carolyn Thomas

by Carolyn Thomas  ♥  @HeartSisters  

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:     .

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◊ 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:

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And for people like John Wesley who continue to insist that the misdiagnosis that happened to Katherine Leon in 2003 could not happen in modern times, consider the more recent experiences from these NYT readers suggesting that, yes, indeed, it can and it does:
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◊ Nicole Miller (Connecticut): 

“I had a SCAD in 2017. The ER doc told me he would be concerned with my symptoms if I was a male. He basically wrote me off. I even have a family history of heart issues. An hour later, I had a full-blown heart attack in the ER and was rushed to the cath lab. The surgeon knew instantly what to look for, and I received 3 stents. I can attest to the bias with women’s heart issues. It occurs on a regular basis. And we aren’t that rare. There are thousands of us with SCAD, and no confirmed cause.”

◊ 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.”

◊ Audrey (Chicago):
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“SCAD is not rare. I was a perfectly healthy 52-year old experienced physician, also not familiar with SCAD, when I experienced Sudden Cardiac Arrest. I survived thanks to my 15-year old son and paramedics with an AED (Automatic External Defibrillator). The initial team of doctors, unfamiliar with SCAD, attributed my troponin level (over 100x normal) to damage from the CPR. They overlooked a second MI (heart attack) which occurred in the ICU on the same night. They didn’t see the dissection on the angiogram, which was later confirmed by two other teams of cardiologists familiar with SCAD.  Sometimes doctors don’t see things if they aren’t looking for them.”

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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.”

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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:

◊ The East Wind (Raleigh, NC):

“I will never forget the patient I admitted to the ICU with acute respiratory failure and acute congestive heart failure in the setting of an acute MI (heart attack). After she was stabilized, I looked over her medical records and saw she had been in the emergency room 5 days prior to coming in to my service in extremis. Her chief complaint 5 days earlier: ‘I’m having pain in my neck like when I had my heart attack.’  Treatment: No EKG, no labs, but a prescription for Valium. It is sometimes down right criminal. Hysterical woman.”

◊ Hey Nineteen (ChicagoI was treated horribly in the ER at one of America’s ‘best hospitals’ and I’m a doctor; they knew I was a doctor and I trained at that same hospital! Then, responding to their request that I review my experience, I wrote a scathing review of their substandard, disinterested care and received… nothing, not a single reply. Unless you’re a major donor, a department chair, on the board, suffer a malpractice-level outcome or can prove a racially-biased disparity in treatment, no one will care about your complaint.   A 30- or 40-something white lady’s laments about not being heard will not be heard either. ERs are evaluated on the rapidity of their response, not the correctness of their response. Maybe if staff stepped away from their computers for a moment and spent a fraction of the time they spend documenting service actually delivering service, we’d have better outcomes across the board in medicine.”

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How does Spontaneous Coronary Artery Dissection (SCAD) happen?

According to The SCAD Alliance (a non-profit organization “committed to improving the lives of SCAD patients and their families through education, advocacy, research and support”):

“The inner lining of the coronary artery splits and allows blood to seep into the adjacent layer, forming a blockage or continues to tear, creating a flap of tissue that blocks blood flow in the artery. It strikes without warning, traumatizing survivors. The cause of SCAD is currently unknown. Most doctors are unsure how to treat it.”

Q:  What was your own response to the NYT SCAD article – and to the comments?

See also:

♥ “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.

♥ When your artery tears

♥ How gender bias threatens women’s health

♥ Cardiac gender bias: we need less TALK and more WALK

♥  How implicit bias in medicine hurts women and minorities

♥ TV News Reporter Jennifer Donelan Survives Heart Attack at Age 36

♥ A zebra among horses

♥ Be your own hero during a heart attack

♥ Same heart attack, same misdiagnosis – but one big difference

♥ Fewer lights/sirens when a woman heart patient is in the ambulance

Published by Carolyn Thomas

14 thoughts on “Is SCAD rare? Or just rarely diagnosed correctly?”

    1. So sorry that this happened to you and at such a young age, Melissa… Anxiety is a default misdiagnosis for many women (not surprisingly – since there are few things in life that are more likely to cause extreme anxiety than being in the middle of a frickety-frackin’ HEART ATTACK!

      Take care, stay safe…. ♥

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  2. Hello! I am 20 years old and am concerned about a possible heart attack. I’ve been having issues for the past 6 days. I am growing more and more concerned and I don’t know if it has to do with my Gallbladder or my heart. :/

    Today I am very fatigued but that could all be due to the poor weather here. My symptoms started bothering me on Monday night. Around 11:30 PM I was trying to go to sleep. I had meatball subs for dinner. I was having acid reflux issues so I figured it was due to my gallbladder. (I have to have mine surgically removed since I do have gallbladder disease. Mine only is 23% functioning.)

    I tried going to sleep but my chest was uncomfortable with pressure. Both my right and left arm were hurting. Later in the night my abdomen was aching so I figured maybe a gallbladder attack. I sweated briefly but at the time my heart rate and blood pressure were all normal. I grew nauseous to my stomach. I got some sleep and by Tuesday afternoon I went to check my blood pressure again. It was high but my heart rate was normal. (I am not prone to high blood pressure. Mine is usually in the normal to low range.)

    So, despite a disagreement with a male roommate, I went to the Urgent Care to try to rule out heart attack. They did an EKG and it came back normal so I went home.

    My discomfort and pain never went away and by Wednesday morning I began to sweat. The pressure in my chest was still there along with the pains in my arms and legs, etc. I was still nauseous. The pains didn’t seem to radiate. They seemed to happen separately. For example, my upper arm would hurt and then my hand would hurt in a separate time period. It still bothered me. This time my blood pressure and heart rate were elevated.

    This has been going on on and off for the past few days. My symptoms are still bothering me but they come and go. I went just yesterday for another EKG and that apparently was normal otherwise I don’t think they would have let me go.

    I asked for the Troponin test to check my heart enzymes. I have yet to get results back on it. I just hope that if I was having one, that it would show up so I can get it taken care of. I am scared that mine will not be diagnosed if I did have one. I hope I am not having one and that it is related to my gallbladder but I am just not sure.

    What should be my next step if the blood test comes back negative? I know I am young but i see that heart attacks can happen to young people too. Heart disease, Gallbladder disease, diabetes, and hypertension run in my family. My grandfather on my mom’s side has had 3 heart attacks and a stroke. My aunt on my mom’s side has type 2 diabetes and my mom has had gestational diabetes. All three have history of hypertension.

    I could do better about my health. I am of a healthy weight, skinny, but I do not exercise much or eat the best. I am not a mom so no hormonal factors should come in play except for I have Polycystic Ovary Syndrome.

    I want to start being healthier and doing good for my heart. I really hope I am having Gallbladder issues still and not a heart attack. I’ve already been to two doctors on this issue. I wanted to come to this blog since I feel I came to the right place. I have learned a lot. Giving the blog a follow! It is a great blog! 🙂

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    1. Hi Rachel – I’m not a physician so cannot comment specifically on your experience. But I can tell you generally that it would be very unusual for a woman your age to be having a heart attack. Not impossible, but very rare.

      I also wanted to briefly mention the cardiac risk factor of family history just to ease your mind a bit. The family connection that researchers tell us does in fact increase our own cardiac risk is what they call ‘first degree’ relatives only (that means just parents or siblings, not grandparents, aunts, uncles, cousins, etc.) And your parent/sibling history of heart disease only counts if their own cardiac events happened at a young age (under age 65 for Mums or sisters, and under age 55 for Dads or brothers). There’s no evidence that older ages than those, or that non-first degree relatives, actually influence our own rate of cardiovascular disease at all.

      Other serious complications might be the logical culprit (e.g. gall bladder issues that you will be having surgery for, and symptoms like nausea and abdominal pain that are common in gallbladder issues). While you’re waiting for your surgery, please make an appointment with your physician so that, if this IS gall bladder-related, a treatment plan to address symptoms can be put into place. Start keeping a Symptom Journal (include the date, time of day, description of symtom, and what you were doing/eating/feeling in the hours leading up to the start of symptoms. This kind of journal often reveals a pattern that can help your doctors with diagnosis.

      You’ve also mentioned a couple of issues that perhaps answer your own questions. Right now, you have no idea if any of your symptoms are heart-related or not. But why not start living your life immediately AS IF you were at very high cardiac risk? Why not start exercising or eating healthier, starting today? After your gallbladder surgery, you’ll likely have to adjust your diet, so why not start researching that now, and start making healthy changes early to see if that helps? Look for credible resources like HealthLine for your research.

      There is simply no downside to taking good care of yourself, and it is a healthier option than just waiting and worrying yourself sick. Best of luck to you…

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  3. I am not familiar with SCAD, but every time I read about something like this, I see red.

    I had a heart attack last summer at the age of 37. It was diagnosed correctly by the ER physician, I was sent upstairs to wait for a cath, and then the cath was canceled because my cardiac echo was normal “and if you really had a heart attack, your echo would have shown wall-motion abnormalities.” I was told I had autoimmune myocarditis and treated with three days’ worth of IV steroids, then discharged with a prescription for oral Prednisone.

    When I asked why the ER would say that I had a heart attack if I did not, the condescending attending told me that “ER doctors see everything as a nail, and they are too eager to use their hammers.”

    When I went home, I felt awful. The fatigue was so bad that I couldn’t do something as simple as slice a cucumber without having to lean against the counter to rest. Two weeks later, I had the same pain that sent me to the hospital the first time. I went to the ER; once again, I was admitted and told I would have a cath the next day. Once again, the cath was canceled by a snotty cardiologist who didn’t want to hear anything about how my father had his first heart attack at 38 (and I was 37) or how I already had one coronary stent. In fact, he told me I should thank him for saving me $10,000 on an expensive procedure I didn’t need. He sent me home.

    About six days later, I was back in the ER with the same symptoms. A stress test showed a perfusion defect that cardiologist #3 said was from a heart attack. They finally took me to the cath lab and found a 100% blockage of my RCA and an 80% lesion in my LAD. They did not stent either blockage, but they put me on high-dose statins and adjusted my cardiac meds. Six months later, I am finally starting to feel like a human being again.

    The worst part is that I owe almost $7,000 in hospital bills. It really grinds my gears every time I make my $180 monthly payment when I know that I spent four days in the hospital getting medication I didn’t need (the steroids) and NOT getting treatment that I did need.

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    1. Arrrrgh! Your story grinds my gears too, Leigh. Still paying for treatment that you didn’t even need because you’d been misdiagnosed?!?! How is that even remotely defensible by hospital administrators? It seems like a miracle that you are still even alive.

      I’m so glad you’re starting to feel better, and I’m also so sorry you had to go through this.

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  4. I’m a long-time subscriber to the NYT, so yes, I read this article. And shuddered.

    Even though I’m older [82] so possibly outside the age range for SCAD, my blood boiled at the idea that so many young[er] women are put at such severe risk by such mindless, careless, clueless misogyny.

    I had a major dose of this last week when I tried to refill my scrip for nitroglycerin and was told by a supercilious, condescending young male pharmacist that I was overusing the nitro and was developing a high tolerance.

    [I checked the FDA and NIH sites and found that nitro tabs stay in the bloodstream for no more than 10 minutes. Which could be why my cardiologist wrote the scrip to be used “every five minutes as needed.”]

    “Do you have angina every day?” the pharmacist asked, with the kind of knowing smirk on his face that a man gets when he’s showing how patient he can be when dealing with a “difficult” woman.

    “YES!” I yelled: I have microvascular disease. I have angina on exertion and angina at rest.

    He mansplained to me about overusing nitro. [Mind you, he did not have a solution, but I guess he preferred that I withstand the pain rather than take the nitro.]

    I went ballistic. I was shaking and in tears — and I don’t cry easily — I think I nearly had a MI right there in the drugstore. Long story short, he finally got dealt with to MY satisfaction. I believe that although the problem of refilling a scrip is a relatively minor problem, it’s highly illustrative of the dismissive attitude held by men, and not just doctors.

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    1. Oh good grief, Sandra! That pharmacist is an example of how a little knowledge is a dangerous thing. (Perhaps he was thinking of the nitro patch which does carry a risk of increased tolerance if the patient doesn’t take a break from wearing it?) But his assumption seems like he was lecturing a stupid old woman who needed his expertise…

      I’m so very disappointed to hear that a PHARMACIST was behaving like this. I usually recommend pharmacists as an under-valued partner on our healthcare team, but your guy needs some remedial education about taking nitro for angina (maybe from pioneer cardiologist Dr. Bernard Lown – nobody explains how to take nitro better than he does!)

      I don’t normally recommend that heart patients go “ballistic” in public, but I’m sure it got the attention of the pharmacist (and everybody else in the shop!)

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      1. This Boston. In Boston, particularly in a small privately owned non-chain pharmacy, it’s not the done thing for people [the few who were there] to acknowledge someone going “ballistic” ;)) And although this jerkball didn’t get the message, his boss certainly did.

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        1. Oh good… If you’re going to be condescending toward your customer, please do it in front of your boss… That story reminded me of picking up a prescription for my newborn grandbaby (whose parents were at home worried sick about a sudden scary medical issue). The pharmacy had called to say ‘it’s ready’. But when I arrived minutes later, the prescription was not ready, and the (very young) pharmacist started making jokes (JOKES!) about how “some new parents” get way too upset over every little thing.

          “Do you have a sick newborn baby at home?” I yelled at him. “Have you EVER had a sick newborn baby?” followed by a 2-minute lecture on how much he clearly needs to learn about sick babies…. If I’d had a heavy brick, I would have thrown it at him.

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      1. Thanks, June. It was surreal and so totally unexpected from a pharmacist, which is why I lost it and began yelling at the guy. I seriously doubt I’ll be treated that way again at that pharmacy, but I’m equally sure I’ll get the supercilious, condescending bit from other medical personnel under other circumstances.

        I think it’s important that women speak up forcefully [even to yelling at the offending male] in response to this kind of treatment. A man wouldn’t put up with this kind of treatment. Neither should a woman.

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