Patient Blogs | Cholesterol Management
The Emotional Impact of Living With Familial Hypercholesterolemia
photo of mother holding hands with daughter

I always assumed I’d die young.

This may sound shocking to most people, who hope and even expect to live well into their 80s, 90s, and beyond. For those who have genetics on their side and have focused on healthy living eating well, exercising regularly, maintaining their mental and physical health – such a statement may sound overly sensational.

But for me, this felt for many years like the only logical expectation.

Orphaned when I was 12, then losing my only sibling when he was 27, I was the only surviving member of my family by the time I was 20. My mother had died of breast cancer, but my father’s and brother’s fatal heart attacks ultimately led to my own diagnosis at 21, after their deaths, of familial hypercholesterolemia (FH).

Beginning in 1976, I took whatever medications were available at the time, adopted a low-fat, low-cholesterol diet, and tried to squeeze in exercise along with child care and work. Yet still, my numbers were higher than the guidelines for acceptable LDL levels. I resigned myself to doing the best I could and prayed it would be enough.

Every night as I lay in bed, trying to fall asleep, I worried over the things I hadn’t done. I feared that one day, I’d be lying in a hospital bed after a heart attack or bypass surgery, regretting my lack of sustained, intense cardio exercise. It might be too late to fix things then.

When my oldest child was diagnosed with FH at 2, my worries multiplied. What if he died in his 20s of a heart attack, as my brother had? Though I didn’t let these concerns control my life, there was no mistaking the script that ran in the background of whatever decision I made.

When I became pregnant with my daughter at 32, I abstractly calculated that if I lived till 50, she’d be 18. The odds were that I’d make it at least that long, I decided, so I’d have gotten her though to adulthood. The last thing I wanted was to leave a child motherless, as had happened to me.

My middle child, another boy, thankfully had not inherited FH, but my daughter did. Her levels at 2 were even higher than my son’s had been. I added concern for her future to the list of things that plagued me as I fought for sleep.

Anxiety is a real and constant companion for many of us with genetic disorders. Yet it’s an ineffective reaction in our quest to maintain both physical and emotional health and doesn’t serve us well.

It’s easy to worry when things feel out of our control, but a lifetime of concern over my own health and that of my children has taught me so much.

When I was younger, I followed doctors’ orders, knowing I was doing all I could. In recent years, with the introduction of PCSK9 inhibitors, my LDL levels are now well within recommendations for those of us with FH, who have had a lifetime of potential plaque development.

What’s more, learning all I can about FH – as well as its close relatives, elevated Lp(a) and polygenic lipid disorders – and sharing this knowledge with others has been another effective way I’ve found to turn fear into action.

But taking action was only one part of the puzzle. It was also important to reframe the way I looked at having inherited FH.

So I’ve chosen gratitude that I know about the FH in our family over anger that it exists.

It strikes me that if I hadn’t been diagnosed with this potentially life-threatening but treatable disorder, I may have avoided many years of fearing it would shorten my life. But I also wouldn’t have received the treatment that has saved me.

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. Action – in combination with a new perspective – is power.

 

 

Photo Credit: RunPhoto / DigitalVision 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 Family Heart 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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