Living with FH and Heart Disease - a blog

01/14/2026

This is one of those stories - where I share yet another event from my everyday life and hope that you find it useful. Today was time for another abdominal ultrasound ordered by my new vascular surgeon. -

Happy New Year, everyone! I cannot believe I am starting my 15th year of blogging about FH. I started this to share my journey (the tests, ...

12/31/2025

With every year, I learn something new. This year was no different. -

With every year, I learn something new. One of the few good things about having this rare condition called HoFH is that as science evolves, ...

12/25/2025

My husband gifted me this pendant of the cholesterol chemical formula for Christmas which I think is so cool. My Nemesis, if you will, and a constant reminder of why I am who I am today. What has not killed me has definitely made me stronger.
Happy Holidays, everyone! 💜🎄💜

12/19/2025

Another amazing year for The Family Heart Foundation - best source of information for FH and High Lp(a). Thank you all for what you do! 🩵♥️

12/16/2025

This is my kind of good news: when after many years of hoping and praying, a new treatment for FH is approved. I know first-hand how much hope this brings to people that have none otherwise. Let's hope this turns out to be effective and safe for all who need it!

🚨Cholesterol Therapy News Alert 🚨

A new option is now available for adults with high LDL cholesterol. The FDA has approved LEROCHOL™ (lerodalcibep-liga), offering another option to help patients and clinicians address high LDL and heart disease risk.

Learn more: https://familyheart.org/fda-approves-lerochol

12/13/2025

Thinking back all the way to October, I could not let the year close before mentioning one of the greatest privileges I have been offered this year - to co-chair the Homozygous FH Gathering hosted by The Family Heart Foundation in Orlando, FL. -

Thinking back all the way to October, I could not let the year close before mentioning one of the greatest privileges I have been offered th...

12/05/2025

If this was some evil cover-up, then how have I known about this for years, without any connection to the FDA? In my opinion, this claim that this was not known is untrue -

Myocarditis is a known — but small — side effect risk of the mRNA Covid vaccines from Pfizer and Moderna, information that federal agencies have discussed openly since 2021.

11/28/2025

11/27/2025

🎉Happy Thanksgiving to everyone! I hope you have many blessings to be thankful for! I am grateful for my health, my family, my job that allows me to get the health care I need, peace, the Family Heart Foundation that advocates for us, every single FH and heart warrior I have met in my journey that has taught me so much, and so, so, so much more! 🎉

11/22/2025

11/14/2025

Perhaps, the future. But will it be good enough for HoFH? - https://www.sciencefocus.com/news/gene-therapy-high-cholestrol

A pilot test used a novel therapy was able to permanently reduce LDL cholesterol and triglyceride levels by turning off a specific gene

10/24/2025

October 2025 - so thrilled to cochair this amazing event for the HoFH community. Thanks to the Family Heart Foundation for hosting this!