I have hypertrophic cardiomyopathy but I am stronger than Eve.

As I said to Jacqueline Fröber

Growing up, I had a physical exam every year at school, along with the rest of my classmates. It was the same training every time. Your doctor will check you for scoliosis, hear if you have heart problems, and then set you on your way.

But the first year of middle school was different. The doctor held the stethoscope to my chest and froze. He mumbled something I couldn’t understand and told the nurse to send the other kids down the hallway.

“She’s like the person on the outside.” he said I had no idea what that meant, but years later I learned that the memorial in front of the middle school was for a 13-year-old girl who had died of an acute heart attack. What’s out there.

The doctor called my mother and told her she couldn’t return to class without approval from her cardiologist.

Not going to school wasn’t an option, so my mom made a promise and a few days later I was diagnosed with hypertrophic cardiomyopathy (HCM). This is a genetic heart condition that causes the heart muscle to thicken and, over time, can cause sudden cardiac death and heart failure. This type of heart disease can occur at any age and most people are diagnosed in middle age, but I was much younger.

Despite the seemingly serious diagnosis, I didn’t know what to make of the news. I was told I could no longer play school sports, but other than that, not much had changed.

My family did not discuss health issues or medical history. Even though my grandfather passed away from HCM, my uncle had HCM, and my sister Lori Anne was diagnosed with HCM years before me, no one talked about it. We weren’t sick kids because our mom didn’t want us to be labeled as sick kids.

Chest pain and shortness of breath followed me into my twenties, but no one knew I had a heart condition unless I told them about it. I married my high school sweetheart, got a job in human resources and health insurance management, and life went on.

Then, about 10 years after being diagnosed, I suffered a stroke.

I had just returned from my honeymoon when I went to the emergency room with a blinding headache and numbness in my left arm. I have lived with migraines for years, but this time I knew something was very wrong.

But when the doctors told me I had had a stroke, I was shocked. I was only 21 years old. HCM’s gravity began to subside. Two years after my stroke, I had my first pacemaker fitted to help my heart pump blood to the rest of my body.

My husband was very supportive of my heart condition, but I relied a lot on my sister. Lori was the only one who had HCM and there wasn’t a lot of information out there in the 90’s. We’ve talked about starting a support group, but where to start?

Lori has always been an advocate for our health, but I started noticing that her hair was falling out and her weight was fluctuating.

“I think you better take care of yourself.” I told her. But I wasn’t too worried because I knew she was going to see a doctor and get a heart test. Plus, I was worried about my health because I was pregnant.

Not long after our conversation, Lori suffered a heart attack. She passed away after being on life support for five days and became an organ donor. She was 36 years old.

Losing my sister was so devastating that I couldn’t understand it. The question repeating in my head: How? why? What’s going on? But the person I always looked to for guidance was no longer able to help me. I was eight months pregnant and trying to be a caregiver for my sister’s two children, but I wasn’t getting any answers. I felt lonely.

A combination of medical errors and overall mismanagement of HCM killed my sister and I was angry. I knew the only way I could move forward was to raise awareness of the disease and help others prevent their sisters from dying from HCM.

2025

I started a web page through an online support group and quickly discovered that there were a lot of people looking for information about HCM and people to talk to. Within a year, we transformed our support group into a non-profit organization called the Hypertrophic Cardiomyopathy Association (HCMA).

As the founder and CEO of HCMA, raising awareness and advocating for people about HCM has become my full-time job.

In 2016, I was preparing for a conference at the White House on the state of cardiovascular health in America, but I had other plans on my mind. I felt my mind doing something it had never done before. I took steroids for back problems and it may have had too much of an effect on my heart. After 47 years and five devices, I needed a heart transplant. About 1 in 250 people have HCM, and I was in the 5% of people who need a transplant.

It’s hard to explain the weight of reality when you’re on the donor list. Every day I was actively dying, but the pump of my heart was keeping me alive.

Physically, I was a very active person, and going to the office every day meant I couldn’t walk down the stairs or get my mail without being completely exhausted.

Mentally, I was trying to stay sane, knowing that I would die if I didn’t get a new heart.

Then, on Groundhog Day — 71 days after being on the list — my phone rang.

They had feelings for me.

“Please don’t let this happen. groundhog day “A movie.” I spoke to the person on the phone.

Luckily it was real. I went to the hospital that night and had a new, beautiful heart placed in my chest.

I feel really good today and I am so grateful to my organ donor, Brandi, who gave me a new heart. And my pristine mind is grateful for the advancements in medicine that have brought me this far.

I want everyone to know that people don’t have to die from this disease. We can live and thrive with HCM. There are new medications on the market, newer, safer surgical procedures and devices, and defibrillators to protect against sudden cardiac arrest. And we can use a variety of tools to improve our quality of life. However, you should talk about your family history of heart health symptoms (chest pain, shortness of breath, palpation, fainting or near-syncope) and know which family members to screen. Early diagnosis and treatment are important to prevent and recognize complications of HCM.

When my sister died, the little girl I was pregnant with, my niece, nephew, and other family members also contracted HCM. It is my mission to do everything I can at any given time to make the world a better place for them and all other people with big hearts.

resources

Hypertrophic Cardiomyopathy Association

American Heart Association

This training material was created with support from Edwards Lifesciences, a member of the HealthyWomen Corporate Advisory Board.

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