None of us wants to have the kind of high cholesterol that doesn’t respond adequately to changes in diet and activity. None of us wants to be diagnosed with a genetic disorder, either.
But we don’t always have a choice. So then what? If we’re lucky, we find our tribe.
For more than 4 decades after receiving a diagnosis of type 2a familial hyperlipidemia at 21, my journey was a solitary one. My father and brother’s early deaths from heart attacks had caused my doctor to take my cholesterol levels seriously at a time when many others advocated a wait-and-see approach. My doctors prescribed statins, provided education about a heart-healthy diet, and ordered regular tests. I faithfully complied.
Two of my three children were diagnosed with the same disorder when they turned 2. Still, I knew no one else with this diagnosis. “Oh, I have high cholesterol too,” a friend might say if the issue came up in conversation. When I shared how alarmingly high our untreated cholesterol was (LDL, or “bad cholesterol,” over 190*), they were shocked. Not once did I speak with someone whose experience had been anything like my own.
It took an elevated cardiac calcium score in the mid-2010s for me to search online for more recent information. When I clicked on the first result, The FH Foundation (formerly The Familial Hypercholesterolemia Foundation, now The Family Heart Foundation), I knew I’d found my people. I quickly learned the accurate name for my disorder: heterozygous familial hypercholesterolemia.
The foundation was seeking individuals to serve as Advocates for Awareness, devoted to raising awareness of this disorder that’s common (affecting 1 in 250) yet tremendously underdiagnosed (80% of those who have it are unaware). Soon my husband, Kevin, and I were on our way to training and advocating for increased awareness and funding at the U.S. Capitol.
On the first night of training, new advocates are asked to share their stories. I wasn’t the only one wiping tears as, over and over, people described their family history of early deaths, their own early heart events, their frustration in trying to share medical information with potentially affected family members, which often fell on deaf ears.
For the first time, I met others with the same genetic disorder as my own. They knew the pain of repetitive early loss due to often-undiagnosed heart disease, the fear of whether they would experience the same outcome, the frustration of others not understanding the difference between “garden variety” high cholesterol and this serious disorder that claims lives way too young.
In the nearly five years since we became advocates, Kevin and I have had many opportunities to spread the word about FH — at health fairs, in community meetings, with doctors and politicians, and individuals we meet in all sorts of settings.
But as someone living with FH, the personal relationships, the friendships I’ve made that have stood the test of time, have had the greatest impact. First there are our fellow advocates and the folks who work at the foundation, some of whom also have FH. A bond forms when we are able to speak in shorthand about topics that affect us, topics that often require tedious explanation and backstory when we attempt to describe our situation to others. In Facebook groups and emails and texts, we educate each other, tell our stories, and cheer each other on. We are, as we often say, an FHamily.
An even greater bond often forms when we are able to support others. I’ve gotten to know those who had no idea their stubborn high cholesterol was genetic, though their family histories were significant for early heart events and their levels were well above diagnostic guidelines. Others had an idea their disorder was genetic but were just now getting serious about addressing it. Some folks needed advice on how to find a doctor who “knows FH,” as not all doctors are well-educated on the topic. And some simply needed a cheerleader, someone to talk options over with -- not for medical advice, but for the sort of personal support we all need.
As I’ve discussed in an earlier post, naming something gives us power. Learning we have familial hypercholesterolemia is the first step toward taking control of our own health.
But to decrease our vulnerability? To feel less alone?
We need to not only find our diagnosis. We need to find our tribe.
*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.
Photo Credit: Witthaya Prasongsin / Moment via Getty Images
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