A loved one's perspective

I was nine years old when my mom had her first spasm.

I remember going home with a friend and her mother explaining to me that my mom was in the hospital.

She said she didn’t know how long I would be staying with them.

We lived in a rural town, and she was transferred to the nearest large city, for which I am very thankful.

After she got home, it was clear that the emergency room doctors in our town didn’t understand why my mom’s heart was spasming. They asked her a litany of typical cardiac arrest risk factor questions—high cholesterol? High blood pressure? Cigarettes? Alcohol? All answers were no.

It was the first time I realized that my parents’ lives were fragile and not guaranteed. In the confusion of the first night at my friend’s, I remember her falling asleep while I lay wide awake wondering if my mom would be okay…if she would live.

Over the years she has had countless doctors dismiss and ignore her own expertise with her body and this rare condition. She has been called a pain medication abuser while in the hospital spasming. My dad has had to advocate for her when they wouldn’t listen.

My mom has to make conscious decisions every day to navigate Prinzmetal’s. Patients like my mom deserve to have their condition thoroughly researched so it can be treated appropriately. They also deserve to be believed.

Liesa, daughter of a loved one

  United States of America

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