“I have extremely high cholesterol without medication.”
This revelation, which I’ve been making for years, is typically followed by responses like these:
- “Oh, that must be difficult. You have to be *so* careful of what you eat!”
- “My (brother’s/friend’s/co-worker’s) cholesterol is high too, but ...”
- “If you eat (vegan/keto/paleo/diet-of-the-moment) and exercise daily, you can get off those meds. I did! And try taking (insert specific vitamin or supplement here).”
But when I go on to explain that my high cholesterol is genetic -- as opposed to the “garden variety” high cholesterol that responds to lifestyle changes -- and when I explain my father died at 50 and my brother at a shocking 27, both of heart attacks, many people stop offering advice and begin to listen.
When I speak with those who also have familial hypercholesterolemia (FH), which is as common as type 1 diabetes yet tremendously underdiagnosed, they often describe having the same interactions with friends and even family members, who may not know they are also affected.
Those of us with FH describe the medications we’re taking and our search for just the right combination to bring our LDL or “bad” cholesterol low enough to counteract a lifetime of plaque-developing levels. We talk about our worry over whether our children have inherited it or whether other relatives may also have it and not know it.
Yet with those who don’t understand FH, we’re often met with easy solutions for “typical” high cholesterol that have no impact on us.
What I wish more people understood -- what I wish I’d understood early on -- is that while a healthy diet and adequate exercise are good for everyone, including us, these things will never be enough to overcome the fact that our livers don’t work in the way that everyone else’s do.
When I learned that my LDL receptors, which are responsible for pulling the LDL out of my bloodstream and clearing it from the body, are either absent or broken, I finally understood. No wonder my strict vegan diet made little difference in my levels. No wonder increasing exercise had little effect.
It’s unfortunate that so few people understand FH, and not only because these conversations can be frustrating for those of us who have the diagnosis. More importantly, I worry about the more than 80% of those who have it and don’t know it. I worry about their kids and parents and siblings, who may also be undiagnosed and heading for an early heart event.
Through these conversations, I’ve learned to describe FH in a way that makes sense to others. But I’ve also learned to be a better listener. People who have high cholesterol have often worked hard to lower it and may be as frustrated as we are when their numbers don’t change. They find it hard to believe that their doctors, who they trust, may not be as educated about FH as they should be. They’re sure they’re doing everything they can and that having LDL that is “better than it was” is good enough.
What I wish people knew about FH is that it exists. That it can be diagnosed through a simple blood test and family history. That early diagnosis and appropriate treatment can result in a normalized trajectory and prevent heart disease and the need for stents or bypass, heart attacks, or worse.
Most of all, I wish people understood this: It’s rare to simply find an individual with FH. Accurate diagnosis often saves an entire family.
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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