Growing up, I was the picture of health. I played soccer, baseball, football and rode my bike constantly. Like most kids, I assumed being active meant being healthy.
I remember my mom mentioning that our family had “high cholesterol,” but I did not think much of it. To me, cholesterol came from a bad diet, not something inherited.
That changed when my father had a heart attack. I had just become a father myself, and the experience shook me. I had not seen a doctor in a decade, but I made an appointment and mentioned my family history. My doctor ordered a lipid panel, and the results floored me: my LDL cholesterol was over 330, more than three times the health limit.
Suddenly, my mom’s warning made sense. This was not about lifestyle. I had inherited something far more dangerous than I realized.
Discovering Familial Hypercholesterolemia
With three young kids of my own, I asked their pediatrician to run cholesterol screenings. The results were worse than expected, two of my kids had even higher cholesterol than I did.
We were referred to a specialty lipid clinic, where genetic testing confirmed our diagnosis: familial hypercholesterolemia.
Despite my numbers, I was not formally diagnosed until after my kids were. It took months of follow-up and multiple appointments before I finally received a genetic test, and even longer before I was on an effective treatment plan for me.
A Broken System
My primary care doctor dismissed questions about advanced therapies that could have helped me sooner. But statins were not enough. When I mentioned PCSK9 inhibitors, medications designed for patients like me, I was brushed off. It was not until we found the FH clinic that I got the care I needed. But that’s not how it should be.
I am grateful to be on the right treatment now, including a PCSK9 inhibitor. I’ve been taking my medications as prescribed and, in combination with exercise and a plant-based diet, my cholesterol is down to 37. I want to be around for my kids as long as possible.
Now, the onus is on me to help my kids live their fullest lives, too.
Raising Kids with FH
There is no manual for how to explain cholesterol and medications, or the importance of following a heart-healthy diet to them. Instead, I model healthy behaviors. Grocery shopping means checking every label. Exercise is part of our family routine.
As a father, it is painful to see statin pills beside gummy vitamins on the counter. My kids should be thinking about playgrounds, not lipid panels. And one day, they will face the possibility of passing this on to their own children.
Hoping for a Cure and a Better Future
This Father’s Day, I am grateful for my dad, my diagnosis, and for my kids’ early care. There needs to be more awareness, better education and improved access to treatment. Most of all, we need a cure.
Until then, we advocate. We live healthily. And we do not give up.
