As Jacquelyne Froeber tells it
Growing up, I took my annual physical exam at school like all of my other classmates. It was the same exercise every time: the doctor checked your spine for scoliosis, listened to your heart for problems, and then sent you on your way.
But my first year of middle school was different. The doctor pressed the stethoscope to my chest and froze. He mumbled something I couldn’t understand and told the nurse to send the other kids into the hallway.
“She’s like the one out there,” he said. I had no idea what he meant, but years later I learned that the memorial in front of the middle school was for a 13-year-old girl who died of sudden cardiac arrest. The one out there.
The doctor called my mother and told her that I could not go back to class without a cardiologist’s approval.
Since not going to school wasn’t an option, my mother made an appointment and a few days later I was diagnosed with hypertrophic cardiomyopathy (HCM) – a genetic heart disease that thickens the heart muscle and can lead to sudden cardiac death and heart failure over time. 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 really know what to make of the news. I was told I couldn’t play school sports anymore, but other than that not much changed.
My family did not discuss health problems or medical history. Even though my grandfather had died of HCM, my uncle had HCM, and my older sister Lori Anne was diagnosed with HCM several years before me, no one talked about it. My mother didn’t want us to be labeled “sick kids,” so we weren’t sick kids.
Chest pain and shortness of breath followed me into my 20s, but no one really knew I had heart disease unless I brought it up. I married my high school sweetheart, got a job in human resources and health insurance administration, and life went on.
Then, about 10 years after my diagnosis, I suffered a stroke.
I had just returned from my honeymoon when a severe headache and a numb left arm sent me to the emergency room. I had lived with migraine attacks for years, but I knew that this time something was very wrong.
However, when the doctors told me I had suffered a stroke, I was stunned. I was only 21 years old. The seriousness of HCM disease began to become apparent. Two years after the stroke, I had my first pacemaker inserted to help my heart pump blood to the rest of my body.
My husband was very supportive of me with my heart condition, but I leaned on my sister a lot. Lori was the only person I knew who had HCM, and there wasn’t much information about it in the 90s. We’ve talked about starting a support group, but where should we even start?
Lori was always committed to our health, but I noticed her hair was falling out and her weight was fluctuating.
“You better take care of yourself,” I told her. But I knew she would go to her doctor’s appointments and get her heart checked, so I wasn’t too worried. Plus, I was pregnant and worried about my own health.
Not long after our conversation, Lori went into cardiac arrest. She was on life support for five days before passing away and becoming an organ donor. She was 36 years old.
The loss of my sister was so shocking that I couldn’t understand it. The questions played on a loop in my brain: How? Why? What happened? But the person I always asked for advice couldn’t help me anymore. I was eight months pregnant and about to start caring for my sister’s two children, and I had no answers. I felt alone.
A combination of medical errors and general mismanagement of HCM led to my sister’s death, and I was angry. I knew the only way I could move forward was to raise awareness of the disease and help other people’s sisters not die from HCM.
2025
I started a website through an online support group and quickly realized that many people were looking for information and someone to talk to about HCM. Within a year, we transformed the support group into a non-profit organization called the Hypertrophic Cardiomyopathy Association (HCMA).
As founder and CEO of HCMA, raising awareness and advocating for people with HCM became my full-time mission.
In 2016, I was preparing for a meeting at the White House on the state of cardiovascular health in America when my heart had other plans. I felt my heart doing things it had never done before. I had been taking steroids for a back problem and that may have been too much for 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 those who needed a transplant.
It’s hard to describe the magnitude of the reality of being on a donor list. Every day I was actively dying, but the pump in my heart kept me alive.
Physically, I went from being a very active person who went to the office every day to being unable to walk down the stairs or get the mail without being completely exhausted.
Mentally, I tried to stay sane, knowing that if I didn’t get a new heart I would die.
Then, on Groundhog Day – 71 days after I was added to the list – my phone rang.
They had a heart for me.
“Please don’t let this be like the Groundhog Day movie,” I said to the person on the phone.
Luckily it was real. I went to the hospital that night and had a new, beautiful heart inserted into my chest.
Today I feel amazing and am so grateful to Brandy, the organ donor who gave me my new heart. And I am grateful for the advances in medicine that have allowed my original heart to bring me here.
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 and safer surgical procedures and devices, and defibrillators to protect against sudden cardiac arrest. And we can use a whole range of tools to improve quality of life – but we need to talk about our family history of heart health symptoms (chest pain, shortness of breath, palpation, fainting or near-fainting) and we need to know which families to screen. Early diagnosis and treatment are crucial for preventing and detecting HCM complications.
The little girl I was pregnant with when my sister died has HCM, as do my niece, nephew and other family members. It is my mission to do everything I can with the time I have to make the world better for you and everyone else with a big heart.
resources
Hypertrophic Cardiomyopathy Association
American Heart Association
This educational resource was created with support from Edwards Lifesciences, a member of the HealthyWomen Corporate Advisory Council.
Do you have any real women, real stories of your own that you would like to share? Let us know.
Our “Real Women, Real Stories” are the authentic experiences of real-life women. The views, opinions and experiences shared in these stories are not endorsed by HealthyWomen and do not necessarily reflect the official policy or position of HealthyWomen.
From your website articles
Related articles on the Internet