Some of the best advice I’ve ever heard boils down to this simple idea: Naming something doesn’t give it power, it gives us power.
When a small-town family doctor told me, at the age of 20, that I had high cholesterol that was clearly hereditary -- based on my father’s and brother’s early deaths from heart attacks -- I was initially shocked. I had no symptoms and thus no reason to suspect my LDL, or bad cholesterol, was as alarmingly high as it turned out to be.
But learning the name for what I had -- type 2a familial hyperlipidemia, as it was typically referred to then, though now it’s more commonly known as familial hypercholesterolemia (FH) -- explained so much.
In the early 1970s, just out of college, and newly married, scheduling a physical and having blood drawn had been low on my priority list. I’d always eaten the low-fat version of everything I could find and had never smoked, determined to learn from what had happened to my father and brother.
But I had never had my cholesterol tested. Now my brother’s recent death at 27 had convinced me it was time to take care of myself.
Sitting in the doctor’s office, letting the diagnosis sink in, I was surprised, yet somehow not. It had seemed likely there was something that ran in our family -- given the early deaths -- and likely that I might have it, too.
Having a name for this disorder provided the first glimmer of understanding about what had happened to my father and brother and made their early deaths feel a little less random. It occurred to me then that knowledge is power; that armed with information, I could take steps to prevent a similar outcome for myself.
Early on, knowing I had FH (as opposed to “garden variety” high cholesterol) helped when even the most restrictive diet, combined with sporadic attempts at squeezing exercise into my already packed schedule, resulted in less than desirable results. Rather than feeling like a failure when others with high cholesterol were successful in bringing their numbers down with lifestyle changes alone, having a name for this genetic disorder helped me understand there was only so much within my control.
Having a name for this disorder also allowed me to be proactive when my own children were born.
When our oldest child was diagnosed at age 2, his pediatrician sent us to a doctor who specialized in lipid disorders, and we followed her instructions to a T. Though we were grateful our second child didn’t inherit the gene for FH, our youngest did, and she joined us on our regular visits to the specialist.
My daughter is an adult now; her own daughter has also been diagnosed with FH and is getting an early start on appropriate treatment. With each subsequent generation, earlier diagnosis and
treatment will likely result in a normalized life trajectory for those who might otherwise have experienced blockages or heart attacks at a young age.
It’s been 45 years since my diagnosis; 45 years of taking the latest medications, monitoring my LDL levels, seeing my cardiologist regularly, and having occasional diagnostic tests. Forty-five years without a heart event. Forty-five years I would likely not have had without that early diagnosis.
While it’s clear to me that early diagnosis saved my life, it did so much more. It helped me understand what happened to those who came before me. It helped me ensure those who came after -- my kids and grandkids -- will have a different outcome. It helped me learn about why our livers work differently and develop the ability to explain it to those who have never heard of hereditary high cholesterol.
All because my doctor gave me a name for what I had in 1976.
If your untreated LDL cholesterol is over 190, you have a family history of early heart events, and changes in lifestyle have had little impact on your levels, you may want to speak to your doctor about FH.
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