Patient Blogs | Cholesterol Management
What It’s Like to Pass a Genetic Condition Down to Your Children
photo of mother with kids walking on country road

There are as many ways to parent as there are people. But, with rare exception, the one thing we all have in common is the intense desire to keep our children safe.

Ensuring they avoid dangerous situations, have regular checkups, work hard in school, and develop appropriate social skills -- these are things we can control, at least in part.

How do we feel, then, when the danger comes from within? When, despite all our best efforts, one or more of our kids is diagnosed with a genetic condition -- in my case, familial hypercholesterolemia (FH) -- passed on from us?

Action helps. You consult with the pediatrician, the specialist, too. If lifestyle changes are necessary, you make them and support your child in developing healthy habits of their own. You learn everything you can about ways to ensure they live a long, healthy life.

Emotions are another story. Here, there is no to-do list where you can satisfyingly cross off another task completed. It’s far too easy to hop on a hamster wheel of never-ending “what-ifs” and “if-onlys.”

But this won’t help you, and it certainly won’t help your child.

When I learned in 1981 that my 2-year-old son had inherited FH, I was disappointed yet unsurprised. I’d been diagnosed 6 years earlier and understood each of my kids had a 50% chance of having the gene. Little was known then about how to treat this disorder in young children beyond adopting a low-fat diet, so that’s what we did. Though I feared he would die in his 20s from a heart attack as my brother had, the danger of my son having serious issues seemed far off, and I was determined to prevent that from happening.

My second son did not inherit FH, but my third child, a daughter, did. By then, her big brother was a pro at managing blood draws and doctor visits, taking medication approved for children, staying active, and watching his diet. Though we were sad she, too, was affected, we applied the knowledge we’d gained to protecting her as well.

Parents of children with FH each have their own reaction to learning the news.

Kristen says, “I was aware of my high cholesterol and my father’s high cholesterol. But when I found out at my daughter’s 2-year doctor’s appointment that she already had high cholesterol, too, I felt like I had failed her. I should have known somehow. I had no idea [this] was something she could be born with.”

Lila shares, “As a mom of four kids, I was pretty devastated to learn that three of them have FH. Especially for my girls, as they have to take a break from their statins while pregnant and nursing, which does have implications for their health down the road. I hate that they have to consider that as they’re trying to make those important family decisions.”

Thankfully, each of us had pediatricians who were willing to screen small children for a disorder few understood. Now, even with American Academy of Pediatrics’s guidelines requiring cholesterol screening between ages 9 and 11 and again between 17 and 21 (at 2 given a family history of FH), too few pediatricians comply. Too few physicians in general are well-versed in this common, highly treatable disorder.

My 16-year-old granddaughter inherited FH. Since she knows I’ve taken care of my own FH since I was 21, this doesn’t feel like a death sentence to her. Instead, she takes her medications and understands both the benefits of self-care and the dangers of ignoring her health.

Lila says, “The thing that gives me hope is that my husband has known about his FH and taken a statin for 35 years and has had no side effects or heart incidents. I’m so grateful we have so much more knowledge now.”

Rather than being resentful that my children and grandchild inherited my familial hypercholesterolemia, I focus, like Lila, on gratitude for effective treatments and physicians who understand FH.

Focusing on what we can do, rather than the things we cannot control, gives us power -- power we now use to protect and educate our kids and theirs.

 

 

 

Photo Credit: Imgorthand / E+ via Getty Images

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Casey Mulligan Walsh

Casey Mulligan Walsh

Diagnosed since 1976

Casey Mulligan Walsh was diagnosed with familial hypercholesterolemia (FH) at 21 and has spent more than 4 decades learning about and managing this genetic disorder and encouraging affected family members to do the same. An advocate for awareness for The FH Foundation, she is devoted to promoting appropriate diagnosis and treatment of this common yet tremendously underdiagnosed disorder in her region and beyond. A retired speech-language pathologist, she writes about FH, grief and joy, and navigating life’s uncertainties and is currently querying a memoir. Find Casey at www.caseymulliganwalsh.com or connect with her on Facebook, Instagram, Twitter, or LinkedIn.

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