Is SCAD rare? Or just rarely diagnosed correctly?

by Carolyn Thomas   @HeartSisters    February 10, 2019

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:   Continue reading “Is SCAD rare? Or just rarely diagnosed correctly?”

My medical diagnosis means more to me than to you

by Carolyn Thomas   @HeartSisters

As a person who lives with and writes about coronary microvascular disease (MVD), I feel lucky that my family doctor, my cardiologist and my pain specialist are all believers. It’s like the trifecta of diagnostic wins for a heart patient! I say that because one of my blog readers, after asking her physician if her puzzling cardiac symptoms might be due to MVD, was told:

“I don’t believe in coronary microvascular disease.”

I guess it’s time to remind such physicians that we’re not talking about Santa Claus or the Tooth Fairy here. Continue reading “My medical diagnosis means more to me than to you”

When you know more than your doctors about your diagnosis

by Carolyn Thomas   @HeartSisters

One of my blog readers needlessly suffered debilitating cardiac symptoms for a number of years before she was finally correctly diagnosed (thanks to a second opinion) with coronary microvascular disease (MVD). During those years, she’d read everything she could get her hands on in a desperate effort to solve this mystery. But when she asked her own physician if MVD might be the culprit, he dismissed this diagnostic possibility, adding that he “didn’t believe” in coronary microvascular disease.

Didn’t believe in it?!

Please note, darling readers, that we’re not talking about the Tooth Fairy here.

We’re talking about a woman living with a cardiac condition that’s been well-studied (as in, peer-reviewed studies done by respected heart researchers and published in actual real-life medical journals).

Continue reading “When you know more than your doctors about your diagnosis”

A zebra among horses

A guest post by Laura Haywood-Cory – to help celebrate Rare Disease Awareness Day, 2/29/12

“Almost three years ago, I had a heart attack at the age of 40, with no family history or elevated risk factors. I’m not diabetic, I don’t smoke, my arteries aren’t clogged, and at the time, I was training for a triathlon.

“I was in shock to wake up one morning with textbook heart attack symptoms — pain in the center of my chest that radiated down my left arm and up into my neck and jaw, I had cold sweats, I felt nauseated.

“My husband drove us to the hospital, where they treated me as if I were having a heart attack–they gave me a nitro patch, an aspirin, drew blood, did a chest X-ray and an EKG–all the while telling me that it wasn’t my heart, because I was too young and too female.   Continue reading “A zebra among horses”

“But what about the men?!”

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by Carolyn Thomas  @HeartSisters

As you know, I rarely publish guest posts here on Heart Sisters (given that I have a small avalanche of 232 half-done draft articles piling up alarmingly) but I wanted to share this post with you. It’s from the irreverent Laura Haywood-Cory of North Carolina, one of my sister heart attack survivors and yet another graduate of Mayo Clinic’s WomenHeart Science & Leadership Symposium for Women With Heart Disease in Rochester, Minnesota (and more recently, of the Mayo Clinic Social Media Summit there, too!)

Her own dramatic heart story is that of a deadly and rare condition usually seen in young, healthy women with few if any known cardiac risk factors: Spontaneous Coronary Artery Dissection or SCAD. I’m happy to say she has been making a heroic effort to beat this sucker into the ground – just one year after surviving her heart attack, Laura completed the Chapel Hill Ramblin’ Rose Triathlon. She now writes about SCAD, women’s heart health, and life in general on her blog  – from which I have lifted this little gem, with her permission. Laura writes:    Continue reading ““But what about the men?!””

“All the SCAD ladies, put your hands up!”

by Carolyn Thomas  ♥  @HeartSisters

Heart attack survivor Laura Haywood-Cory, one of my heart sisters and a fellow “graduate” of the WomenHeart Science & Leadership Symposium at Mayo Clinic, emailed me with great excitement last week:

“The Wall Street Journal interview with Katherine, me and Dr. Hayes is now live!!”

This WSJ piece tells the inspiring story of how heart attack survivor  Katherine Leon, with Laura’s help, convinced a world-famous hospital to launch research on the rare and deadly heart condition they had each survived: spontaneous coronary artery dissection, or SCAD. (See also: When Your Artery Tears).  

Continue reading ““All the SCAD ladies, put your hands up!””