I’d never heard of Spontaneous Coronary Artery Dissection before the doctor told me I had it. Although I was already 3 heart attacks in, I never imagined I would get such a crazy diagnosis. It felt like falling into a sink hole. All the blood in my body dropped to to my feet. My mouth couldn’t form words.

I’d never heard of Spontaneous Coronary Artery Dissection before the doctor gave me the diagnosis. Although I was already 3 heart attacks in, I never imagined I would get such a crazy diagnosis. My cardiologist explained that there were others like me that experienced tears in their artery walls leading to a reduction of flow or blockage. Like me, they were also otherwise healthy women (and some men) who were unexplainably having heart attacks. Often more than once.

As my husband and I tried to absorb the shock, she told me what the medical community knew: many heart attacks occurred around actual child birth. There was up to a 30% chance of having another heart attack. I couldn’t believe it. Her description sounded like science fiction.

“So what can we do?” I asked her. When she told me there was no known cause or cure, I was dumbfounded. When she told me there was not enough research, I was angry. How were young mothers and their families not meriting life-saving answers?

This year marks the 20 year anniversary of my first heart attack. Since then I’ve had nine heart attacks in total. One that stopped my heart for ten seconds. One on my daughter’s birthday. Another time while looking at houses. Once while riding a recumbent bike.

To recover, I’ve been to cardiac rehabilitation three times. I’ve had two defibrillators. To say that SCAD has become a rutter for my life would not be an overstatement. Living this close to precarity has not been easy. In so many ways, it has been a gift.

But I wouldn’t reccommend it. I’ve had to learn to live this way. Tens of thousands of patients and their families live this way.

But we shouldn’t have to.

Join me in helping to advocate for answers.

#1

Please read and support journalism covering this important topic:

in Women’s Health: This Heart Attack Targets Young, Active Women and Doctors Don’t Really Know Why

in The Guardian: Jen didn’t fit the profile for a heart attack – then she had three of them | Health | The Guardian

in BBC: SCAD: Sisters had heart attacks just days apart due to rare condition

on CBS News: Doctors say some women with no risk factors can still be susceptible to heart attack

on The Today Show: Mom, 33, recalls early signs she was having a heart attack that she dismissed: ‘Listen to your body’

in People Magazine: Utah Mom, 33, Has Heart Attack After Walking on Treadmill, 4-Year-Old Son Told His Dad She Was 'Sleeping'

#2

Learn more and support a cure:

SCAD Alliance

SCAD Research

3. Take care of yourself and be a source of education and inspiration when you can. After twenty years of living with daily uncertainty, I’ve become a pro at prioritizing, and balancing both my stress and energy. Here is some specific information that people with SCAD can use — and non-SCAD normies can benefit from as well.

  1. Know your vulnerabilities, communicate what you need, and advocate for yourself

  2. Don’t waste energy dreaming up potential worst case scenarios

  3. Believe life can get better — and look for ways to make it so

  4. Confirm and nurture your supports

  5. Letting go of expectations and staying curious are much more bad ass than getting what you want