Living with FH and Heart Disease - a blog

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!

10/19/2025

New numbers, new symptoms, many questions - just another day in HoFH land -

As I mentioned in my July post ( https://livingwithfh.blogspot.com/2025/07/the-end-of-era-good-bye-praluent-hello.html ) , my insurance deci...

10/15/2025

Such great news for HoFH! .
Thank you, Family Heart Foundation !

📢 Big news for the FH community!

A new ICD-10 code for Homozygous Familial Hypercholesterolemia (HoFH) has been approved — a major step toward better recognition and care for people living with this rare and severe genetic condition.

Beginning October 1, 2025, new ICD-10 codes take effect for HoFH (E78.010), HeFH (E78.011), and unspecified FH (E78.019) — helping ensure every person with FH is properly identified and supported.

This milestone reflects years of dedication by clinicians, advocates, and families who understand how vital early and accurate diagnosis is. 💗

Learn more: https://familyheart.org/new-hofh-icd-10-code-approved

10/11/2025

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Heart attacks and strokes rarely occur without warning.

09/24/2025

Happy FH Awareness Day! - September 24 marks FH Awareness Day, recognized during Cholesterol Education Month.The Family Heart Foundation established FH Awareness Day in 2012 and it has since gone global! - Do you ? Do you ? - visit the Family Heart Foundation's page to find out more about this genetic condition that is severely under-diagnosed and which poses a great risk for early atherosclerosis.

08/10/2025

If you or someone you know has HoFH (Homozygous Familial Hypercholesterolemia) you might wonder what this diagnosis means for the future. What’s it really like to live with this condition? What treatment options are available and what are the experts working on? Are there people out there in the same situation?

The Family Heart Foundation HoFH Gathering 2025 in October is the place to learn, gain perspective and make friends who can be an extended support system that is so crucial to living your best life with this disease.

Here are just a few things that I gained by attending last year’s HoFH Gathering:

-- I met doctors and other researchers that explained how my disease is different from other elevated cholesterol conditions. This has allowed me to work with my doctors and tailor the right treatment for me.
-- I got a front-row seat in the conversation about what new treatments are already available, as well as what is still in research. Knowledge is power, and it is so important to know all our options for a condition that is often hard to manage.
-- Perhaps the most important gift that this gathering has offered me is the opportunity to meet people with my condition and to feel like I am part of a family. There is immeasurable value in connecting with others who understand your life and the challenges that come with our unique situation. People like me shared their own journeys. You feel less alone and more powerful when you build human connectedness through common experiences.

Link to register: familyheart.org/hofh-gathering-2025

Welcome to the 2025 HoFH Gathering! Thank you for registering to join us for this special event!

08/06/2025

What new science makes possible and why the Family Heart Foundation is so important. A study that started with them. -

BOSTON — A novel machine learning algorithm has potential to improve detection and treatment of individuals with familial hypercholesterolemia, according to a new study. Spencer V. Carter, MD, clinical assistant professor of medicine in the division of cardiology at UT Southwestern Medical Cen...

07/26/2025

One of the most frustrating things about managing a disease using medicine is being caught in the middle of the battle between pharmacies and insurance companies. It adds insult to injury -

I have had a long, sinuous, adventuresome path with PCSK9 inhibitor drugs. A complete unknown when my FH was diagnosed 42 years ago, a drea...

07/18/2025

One last stop in The Mitten State, at the Motown Museum. I was so eager to visit this historic place where legendary music figures like Diana Ross, Stevie Wonder, The Supremes and Jackson 5 made their mark! But the tickets were sold out for the day. Bummer! It was good to just be on the same grounds.
Remember that our goes on till August 16. You can donate to a team, or just give a one-time donation to the Family Heart Foundation. - https://familyheart.org/walk-to-save-more-hearts
To quote my cardiologist: "You must do all the advocating you can do to ensure this research happens for FH! There has never been a bigger need for donations and awareness than now!". Thank you!

07/17/2025

Even with FH, a clean and healthy lifestyle helps, even when to blame are not necessarily our life choices, but our genes.
Did you know that Henry Ford was a vegetarian and he wrote a book about how smoking was detrimental to one's health, even at the beginning of 20th century when smoking was ubiquitous?
We visited the Henry Ford Museum and the adjacent Greenfield Village on our visit to Detroit, MI.
It was an intensely hot day, and we spent more time indoors than out, but the museum did not disappoint. A true testimony of human ingenuity and drive.
- https://familyheart.org/walk-to-save-more-hearts