How Can the FH Registry Save Your Life?

Most people know that high cholesterol is a ticking time bomb, and that it’s important to eat heart healthy foods low in saturated fat and cholesterol.

Public health awareness—and the drumbeat of cholesterol medication commercials on TV—have drummed this into our collective consciousness.

But there’s a blind spot in these efforts: We tend to think of heart problems resulting from high cholesterol as a “someday” problem, the result of many long years of poor eating, laziness, and neglect.

And so many, many delicious cheeseburgers… Source:

But for a significant portion of the people living with high cholesterol, that danger may strike sooner than they ever dreamed.

Katherine Wilemon, a mother of two from California, found this out the hard way a few years back when she had a heart attack… at only 38 years old.

Katherine was already aware she had high cholesterol, but unbeknownst to her, she actually had an aggressive inherited condition called familial hypercholesterolemia, or FH.

The official diagnosis didn’t come until two years after her heart attack; before that, her doctors struggled to explain how an otherwise healthy young woman could have such severe heart disease, and it took a referral to a lipid specialist to zero in on the diagnosis. Once she realized the problem could be inherited, Katherine had her family members tested—her toddler daughter tested positive.

The good news is that with treatment, both Katherine and her daughter can significantly lower the risk of future heart problems from FH.

But in researching FH and traveling globally to share her story, Katherine realized that her case is not unique, and that the United States is not nearly aggressive enough in screening for FH.

Shockingly, as few as 10% of the patients currently living with FH have gotten a correct diagnosis—that leaves a whopping 90% of the FH population walking around in very real danger!

No pressure or anything… Source:

Knowing how much FH had changed her life, Katherine made it her mission to raise awareness of FH and get that other 90% diagnosed.

She founded the FH Foundation to not only raise awareness of the condition, but to build a national registry of FH patients to assist in diagnosing others.

Building off of models she’d seen in her travels around the world, the HIPAA-compliant registry was introduced in Fall of 2013 on the FH Foundation’s website. Both doctors and patients can enter information, and the more people that use it the more value it will bring.

Katherine Wilemon and her family. Source:

The Foundation is also working on some other efforts to ease the process of screening for FH. And for those already diagnosed, the Foundation offers educational resources and support to help patients take the next step in their journeys.

It might be a while before Katherine can see her dream of finding and diagnosing everyone with FH.

Until then, let’s all take a moment to thank her for turning her near-tragedy into a life-saving FH lesson for the rest of us.

Excellent work, Katherine!

Ronald Ledsen

Ronald Ledsen

After emigrating from his native Sweden, Ronald spent a stint in the Merchant Marines while trying to work out what he wanted to do with his life. He discovered a love of writing while helping a friend write anonymous Harry Potter fan-fiction online; he discovered meaning to his writing when he began journaling after an anxiety disorder diagnosis. Ronald is most relaxed when spending quiet time with his wife, two sons, and hyperactive cat.

Follow us