Living with FH and Heart Disease - a blog

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...

03/14/2026

(a) - Amazing news!

🚨 Breaking News 🚨
The updated ACC/AHA Multi-Society Guideline for Managing Lipids has been released.

Key highlights:

> All adults should be screened for lipoprotein(a) at least once in their lifetime. Elevated lipoprotein(a) (≥125 nmol/L or ≥50 mg/dL) is often inherited and increases cardiovascular risk.

> Children should be screened for familial hypercholesterolemia (FH).
• Screening with a lipid profile is recommended between ages 9–11 if not previously tested.
• Earlier screening (starting at age 2) may be appropriate when there is a family history of premature ASCVD, severe hypercholesterolemia, or FH.

> Specific, risk-based LDL-cholesterol goals have returned to guide treatment decisions.

This marks an important step in the fight against cardiovascular disease. 💗
Learn more: https://newsroom.heart.org/news/accaha-issue-updated-guideline-for-managing-lipids-cholesterol

02/28/2026

This is the face of Homozygous Familial Hypercholesterolemia (HoFH) - a rare disease. When people hear 'rare disease' they hear 'different', 'broken', 'sad', 'obvious', 'lonely', 'unrepairable', 'unfortunate'. But when I hear it, I hear 'strength', 'hope', 'determination', 'patience', 'resourcefulness'. I hear 'invisible', 'together', I hear 'tomorrow'. I hear 'fight'. Our lives should not stop with a diagnosis. They should inspire to look at the world differently. Happy Rare Disease Awareness Day to everyone whose life has been affected by a rare disease.

02/26/2026

🌟 A new clinical trial for a potential one-time gene editing investigational medicine to lower high cholesterol is enrolling now 🌟

See if you prequalify for this groundbreaking clinical trial 💪.

https://www.vervetrials.com?utm_source=family-heart&utm_medium=social-media&utm_campaign=social-media&utm_content=eng

02/26/2026

We are excited to share new resources for individuals and families based on some of the most common questions we receive at the Family Heart Foundation. New fact sheets include an overview of cardiac testing, a special deep dive into coronary artery calcium (CAC) scores, and understanding peripheral artery disease (PAD) symptoms and treatments.

Access the full fact sheets and learn more at: https://familyheart.org/new-resources-available

02/11/2026

Today I celebrate 10 years since the longest night of my life. Or was it my first death? For what do you call when your heart is stopped? Thoughts and musings on the 10th anniversary of my open-heart (literal) cold reboot. -

The menu: Aortic valve replacement with an On-X mechanical valve Ascending aorta and aortic root replacement with a Dacron graft Aortic arch...

02/06/2026

New study on statin side effects. And some good news. -

The results, in The Lancet journal, come from trials involving more than 120,000 people comparing statins with a dummy drug or placebo.

02/03/2026

The link between taking statins and muscle pain -

Around 10 percent of people who take statins to lower cholesterol experience mysterious muscle pains, causing many to discontinue these potentially life-saving medicines.