Diagnosed With Familial Hypercholesterolemia: Now What?

So you just got diagnosed with familial hypercholesterolemia. Now what?

Learning the difference between types

It was shocking, receiving the diagnosis. At the time, I thought, 'How could I have high cholesterol? I’m a teenager. I’m active. I eat well.' But then I learned the difference between lifestyle-induced high cholesterol and genetically high cholesterol.

It was clear that my case was genetic. I’d lost my Mom just a few months before my blood test, and she was also petite, active, and healthy. The genes that I’d inherited from her were obvious from the outside. We had the same hair and the same body type. No wonder our unseeable genes were the same.

Genetic versus acquired

Lifestyle-induced high cholesterol, also called acquired hyperlipidemia, is the type that’s impacted by lifestyle choices. Diet, exercise, smoking, stress — they all affect the heart and can lead to cholesterol buildup in the arteries, increasing the risk of heart attack and stroke.¹

Genetically high cholesterol, or familial hypercholesterolemia, leads to those same increased risks without the input of lifestyle. Someone with this version can be a vegan marathon runner who meditates 5 times a day and has never touched a cigarette. But they can be walking around as if they drink canola oil instead of coffee.

Advice for my younger self in living with FH

It’s been 12 years since my diagnosis, and here’s what I’d tell my younger self if I could go back in time:

1. It’s not your fault

You didn’t choose your genes. You’re not broken. You’re not doing anything wrong. This is just how you were made! Someone who needs glasses in order to see clearly doesn’t have anything wrong with them, they just need a little external help to see better. It’s the same as someone with FH! There’s nothing wrong with you, you just need a little help from medicine in order to live a normal, healthy life.

2. Medicine was created for you

For the longest time, I fought it. I did every possible lifestyle modification I could have to get my cholesterol levels down. But after years of doing more harm than good by robbing myself of necessary nutrients and celebratory pieces of dessert, I surrendered to what I know now to be true. Medicine was created for people like us. Find one that works for you, and learn to love that little pill or injection. It’s helping you life a fulfilling life!

3. Find a specialist

The level of care that I’ve received for my heart health improved drastically when I found a provider who understood what FH was. Find an FH specialist, a lipid specialist, or a cardiologist who specializes in genetically high cholesterol. They will understand the special considerations of your case compared to someone with lifestyle-induced high cholesterol.

4. Prioritize your heart health

Just because you take medicine doesn’t mean you should abandon other lifestyle choices that improve your heart health. Eat a heart-healthy diet (I like to eat 80 percent heart-healthy and 20 percent for my soul), exercise regularly, get your heart pumping by going on a walk or hike, and focus on de-stressing with yoga, breath-work, and meditation.

5. Find a community

There are so many people who have this condition! One in 250! And many of those people don’t even know it! The more you share your story and educate others, the more people will come to you who are going through it, too.²

Navigating this diagnosis has been challenging at times, but it’s also been empowering and fulfilling, and I wouldn’t change my path if I had the option to.