Since I was 21, I’ve known I have seriously high cholesterol. With untreated total cholesterol as high as 450 and a family history to catch the attention of even the most conservative physician (most notably, my only sibling dead at 27 of a heart attack), I would have been foolish not to take my health seriously.
Back then -- in the 1970s -- low-fat diets were all the rage. Fake butter in the form of sprinkles. Low-fat versions of just about everything, often made more palatable by adding sugars in various forms. Carbs in place of fats. I was wholeheartedly on board.
As decades passed, one new “best” diet after another had its turn as nutrition du jour. Over and over, I adhered strictly to a plan promising encouraging results only to be disappointed when my cholesterol levels didn’t budge.
Then there was the issue of exercise. Never an athlete, working and raising three children, nonetheless I made my best attempts at staying active. I set up dates to walk with friends, occasionally dipped my toe into running, rose early to ride a stationary bike, and did aerobics at what I not-so-fondly referred to as “torture class.” Again, nothing had much impact on my lipid results. The harder I tried, the more frustrated I became.
I knew my cholesterol was hereditary, that it “ran in my family.” What I didn’t yet understand was that my diagnosis, familial hypercholesterolemia (FH), was a genetic disorder, which meant that my liver didn’t function in the same way others’ did to rid the body of LDL, or “bad cholesterol.” I didn’t yet know the receptors that removed LDL from my blood were broken or, worse yet, absent altogether. I didn’t realize what I ate and how much I moved would never be enough to correct this issue.
Over the years, statins helped but never got my LDL where it needed to be. More recently, with the release of PCSK9 inhibitors, I finally have achieved numbers that are low enough, even for those of us with FH, that no further plaque development may be possible.
So are healthy diet and regular exercise irrelevant, then, for those of us with FH?
The answer is a resounding “no.”
While a healthy lifestyle may not be curative for those with FH -- there is no “FH diet” -- and will never be enough to bring LDL to a safe level, it is a protective factor. For some, moving to a plant-based diet can have a positive impact, while for others, results are minimal. The same applies to limiting fats or sugars. Though we may share a diagnosis of FH, we are unique individuals. Your mileage may vary.
However, each of us is also a whole person, comprised of so much more than our genetic cholesterol disorder. Learning about what constitutes a healthy diet and staying up to date with new information is key. The protection provided by eating well and getting regular exercise extends to all the body’s systems and to so many other potential illnesses and disorders.
Since FH can affect multiple family members, including our children, there are other factors to consider. Even young children with FH have been found to have arterial plaque since dangerously high LDL levels have likely been present since before birth.
As parents and caregivers, this knowledge may tempt us to be overly zealous about dietary restrictions. Sadly, our well-meaning focus on what our children do and don’t eat can result in their having an unhealthy relationship with food or, worse yet, an eating disorder.
Instead, adopting healthy, lifelong diet and exercise habits -- for our children and for ourselves -- and relying on the medications that help our bodies process cholesterol efficiently are the key to living not only a long and healthy life, but a happy one as well.
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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