You’ve been diagnosed with familial hypercholesterolemia (FH), the genetic form of severely high cholesterol, which can lead to early heart events or death if left untreated. Family members have died young; this explains a lot. You’re young. You’ll take prescribed medications, see a specialist, make lifestyle changes. You have everything under control.
Now you have children. You have each of them tested at 2, according to guidelines, and one or more of them has inherited FH. You’re disappointed, but you know early treatment is essential, so you do for them the very things you have done for yourself: medications and monitoring. Healthy diet and plenty of exercise.
Friends and family don’t understand. “But he’s only 3! How can he have high cholesterol? He looks so healthy.”
Or, more frustrating, “I’ve read high cholesterol has nothing to do with heart health. It’s all a myth to make money for big pharma.”
You explain the genetics, your own diagnosis, and finish with this: “And my (father, aunt, brother) died at (shockingly young age). Of a heart attack.” Then they listen.
This may all sound familiar, or maybe it’s the first time you’re hearing about this often-undiagnosed yet common disorder, which affects 1 out of every 250 people, similar to type 1 diabetes. Yet if you have children -- or grandchildren -- you know protecting their health sits at the top of the must-do list.
With lifelong disorders such as FH, our responsibility as parents also includes preparing our kids to manage their health throughout their lifetimes. So we provide age-appropriate information about FH, how their bodies work differently from others’, how consistent treatment is essential. How it’s passed down from generation to generation.
We also teach our children to be wise consumers of information. We explain that knowing who to trust on the internet is hard, but when someone says they have a secret remedy no one in medicine wants you to know, that’s a red flag.
“Eat this, not that” is an effective strategy, when used in moderation, to educate our kids about the importance of eating healthy. But when overly zealous parents place too much focus on diet, kids with FH can fall into eating too little due to feeling anxious about their condition, sneaking “contraband” in private, or developing other unhealthy habits.
Instead, we teach by example that a healthy lifestyle is important for everyone, but an occasional splurge is fine. We explain diet alone will never “fix” FH, that medications are needed to do the work our livers don’t do effectively on their own.
Yet as our children grow and become parents themselves, we have less and less impact on their decisions. This can be a welcome relief. But sometimes, as we’ve seen throughout the pandemic, no matter how much information we give people -- even our children -- they may not choose to follow through.
In my family, the poor outcomes of previous generations have been replaced by a mother who, at 67, has had no heart events. So many other families have a similar story. Because I’ve received care for my disorder since I was 21, my children and grandchildren have never seen firsthand what can happen when FH goes untreated. I’m thankful early deaths are only a story to them, yet the sense of urgency is lost.
When our adult kids take care of their FH, we breathe a sigh of relief. The baton has been passed. But if they don’t seek or maintain treatment, it can cause feelings of anxiety for us. It’s easy to become overly zealous about far more than diet now, constantly pushing them to make the health care decisions for themselves and their children we know are in their best interest. This rarely works.
There are no easy answers, no magic bullets to ensure our children pay attention to the wisdom we’ve gained through our own experiences, especially when theirs have been so different. All we can do is continue to love them, educate them, and quietly nudge them to consider the impact of their actions -- or lack thereof.
Our devotion to raising awareness of FH, like most everything else in life, begins at home.
Photo Credit: Andy Andrews / The Image Bank via Getty Images
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