Living well with FH

Stories and insights from people living with Familial Hypercholesterolemia (FH)

Inaugural Blog Post
by Brad

So, you’ve just found out you have FH.

You’ve been lucky enough to be diagnosed correctly (and you may not exactly feel lucky, but trust me, I’ll elaborate on that in a moment), and after your doctor kindly explains to you that FH stands for Familial Hypercholesterolemia, you’re most likely still not entirely sure what it means.

Well, don’t worry, you’re not alone. Not a single one of us really knows what it means, at first. At this point, as you sit there in that uncomfortable, stiff-backed chair in the examination room and listen to your doctor fill in a few of the pertinent details, a part of your mind is distracted. It’s still trying to wrap itself around what you’ve just learned.

Some of it gets through, of course.

You have FH.

It’s real, and it’s a part of you, and it’s incurable.

But in your mind, it’s still just an abstract concept; it’s something your doctor insists is real, and therefore it must be, but maybe it doesn’t quite feel like it can be. This isn’t shock or denial, don’t worry. This is just the natural reaction to hearing you have a genetic disorder that you’ve most likely never even heard of before.

What your doctor is telling you right now is very important, however, so let’s take a moment to process some of the more important information.

He tells you that FH is an inherited disorder, that it was passed on to you by one (or both) of your parents, and that if you have children, each one of them has a 50% chance of inheriting it from you. That part definitely gets through to you, and you make a mental note to have your children tested immediately, the best decision you’ve made all day.

The doctor goes on to explain that having FH leads to premature cardiovascular disease, and as you think back on your family history, the reality of the situation begins to sink in.

You’re ready to accept it now: you have FH. (And if you’re anything like me, you’ll have trouble pronouncing the words Familial Hypercholesterolemia the first few dozen times you say it. You’ll soon decide to simply refer to it as FH when you tell your family and friends about it. This will backfire, though, trust me, because the first thing anyone asks after you tell them you have FH is: “what’s FH?” and you’ll have to learn to say it anyway.)

Which brings me back to that thing I said earlier, about being lucky enough to have been diagnosed in the first place. Because the truth is that more than 90% of the people in the United States who have FH don’t even know it. They are still undiagnosed, and like you, they’ve almost certainly never heard of it before. And therefore they don’t have the knowledge or the tools to turn around and fight it.

So think about this for a second: along with your diagnosis, you’ve been handed that knowledge, and very shortly, you’ll have those tools, the ones that so many thousands of others out there don’t even know they need. These will be the tools that will help you make things better for yourself and for your family; they will provide you with a clear and powerful new direction, and give you the opportunity to improve your quality of life.

And once you have those tools firmly in hand…yeah, you guessed it: you can now start to fight back. So, do you feel a little luckier now?

Yeah, I thought you might.

Brad lives on New Hampshire’s seacoast with his two daughters, one of which has inherited FH from him. He was diagnosed with high cholesterol at age 18, but didn’t learn he had FH until 2002, after undergoing bypass surgery at age 37.