Living with FH and Heart Disease - a blog

07/25/2026

There is something so powerful in the community. It brings strength and recognition and fuels you from each other's resilience. Here with my tribe in San Antonio, TX for the third annual HoFH Community Gathering.

07/24/2026

In San Antonio, TX this weekend for the Family Heart Foundation 's HoFH gathering. It is. So. Hot. 99F. 112 heat index. But we will have a good time!

07/17/2026

I remember when in 2016, I walked into my cardiologist's office as I was going to start taking an injectable PCSK9 drug for the first time and I asked him "when are they going to make it a pill?". He said: "Hmm. Yeah. Let's not plan for that. Probably not in your lifetime. We take what we have." - We live in magical times indeed -

FDA Approves New Oral PCSK9 Inhibitor for Adults with High LDL-C, Including HeFH The U.S. Food and Drug Administration has approved LIPFENDRA® (enlicitide), the first and only once-daily oral PCSK9 inhibitor for adults with high LDL cholesterol (LDL-C), including people with heterozygous familial

07/14/2026

Is there a magic list of specialist physicians to manage HoFH? -

I am often asked “what specialists do you see with your condition?” - as if this would be a mandate you would make and not let your conditio...

06/06/2026

Someone once said: "You are rare, but you're not alone". If you have HoFH, come meet people like you at the Family Heart Foundation's 2026 HoFH Gathering in San Antonio, TX in July. You'll be glad you came. -

Join us for the Family Heart HoFH Community Gathering—fun, support, and connections all in one place!

05/30/2026

If there is just one message I can get across to those who are just now learning to navigate FH and its convoluted journey through medicine, therapies and the right specialists, is this: it will take time and patience, and more than anything, it will take effort, to learn and become knowledgeable. And when you get there, put that to good use to advocate for yourself. Never rely on anyone else, no matter how promising their commitment seems to be. -

I am contemplating launching a new label for some of the blogs, and I should call that new category “never give up”. As I mentioned many tim...

05/04/2026

It might be a cliché, but this can never be overstated: knowledge is power!
I was diagnosed with FH at the age of 8. But it was not until I was 42 (34 years later) that I knew the exact name of my disease: Homozygous FH.
Since then, I have been approved for two therapies that were approved (at the time) only for HoFH. Without a clear diagnosis, I might not have received these therapies.
Here's the moment when I found out my real diagnosis - 9 years ago. So much has changed since then, including increased awareness for this sometimes invisible and lesser known disease which to many could be a death sentence.
Happy HoFH Awareness Day to everyone who manages this or knows someone who does.

Well, it has been a long journey, of about 36 years, to diagnose me with the correct kind of FH. 36 years. I have thought that I have known ...

04/15/2026

Interesting insight and way too relatable. They also touch upon why the correct diagnosis matters. -

Testing has become so advanced that doctors now miss important elements of diagnosis.

03/24/2026

March 24 - 1 in 5 people is impacted by high lipoprotein(a). High Lp(a) increases risk of heart attack or stroke. Cardiovascular disease remains the leading cause of death in the United States. If you have inherited high Lp(a), a heart attack or stroke can occur in the prime of your life. But there is hope!

03/21/2026

It's been a busy couple of months, as I continue to try to stabilize my numbers, find the right medications, grapple with new and old symptoms and find out about my first official signs of a stroke -

It’s been a long year already, and a busy couple of months. As the world turns elsewhere and everywhere around us, our journey through it co...