HeFH Really is as Serious as a Heart Attack

Two years ago, my phone rang in the middle of the night and our journey with heterozygous familial hypercholesterolemia, or HeFH, began.

My immediate thought was I’d won the Publisher’s Clearinghouse Sweepstakes and they were calling to let me know I needed to be home the next day around noon, and to practice acting surprised and overjoyed. This pleasant thought was squashed when the breathless (no, it wasn’t that kind of call, either) voice of my best friend said, “Can you meet me in the emergency room? I think I’m having a heart attack.” I’m not sure, but I think I made it there in under 10 minutes wearing my pajama bottoms with a tee shirt with mismatched slippers.

“How in the world could a 40-year-old, tennis-playing, jogging fanatic be having a heart attack?” I asked the nurse who walked me back to the room where my friend was hooked up to a zillion things. The nurse shrugged and said, “Who knows?” A blood pressure cuff suddenly inflated, and the machines beeped and booped, but what struck me first was how pale my friend’s face was, and how scared she looked.

Fast forward two weeks, and one heart surgery later, my friend had installed herself in the master bedroom of my house so I could help her through the recovery. “So, what do you think caused your heart attack?” I asked. She said, “I knew I had high cholesterol, but I figured all the exercise, and vitamin supplements I took would take care of it. Obviously, I was wrong.”

Over the next few months, we found out she has what is called heterozygous familial hypercholesterolemia, which caused her to have very high levels of low density lipoprotein cholesterol, or LDL–also known as “the bad cholesterol.” This caused a buildup of plaque in her arteries, which caused the heart attack.

Treatment for my now-recovered friend has included an addition to her exercise regimen and vitamin-laden food choices: she also takes a combination medication therapy that includes statins to help control her LDL levels. Had she been diagnosed earlier, she may have avoided having a heart attack. So, if you are an adult, and your LDL-C level is over 190, it’s worth finding out if you, too, have HeFH. This particular type of high cholesterol can’t be managed through lifestyle changes alone. It requires serious medical attention, so get going!

By the way, I’m still waiting for that Publisher’s Clearinghouse call. Hopefully, they’ll call before 9 pm.

Erica Zahn

Erica Zahn

Erica Zahn is passionate about raising awareness of rare diseases and disorders and helping people connect with the resources that may ease their journey. Erica has been a caregiver, and is a patient, herself, so she completely relates to the rare disease community--on a deeply personal level.

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