Homozygous Familial Hypercholesterolemia then…
When I was diagnosed with homozygous form of familial hypercholesterolemia 10 years ago, after multiple bypass surgeries, the only up-to-date and optimistic information I could find on the internet was the Family Heart Foundation website. The rest was … Read More →
The Food and Drug Administration (FDA) approved today a new drug to treat adult and pediatric patients aged 12 years and older with Homozygous Familial Hypercholesterolemia (HoFH), the rare and most severe form of FH.This is welcome news, as individuals with HoFH usually are not able to adequately … Read More →
the Family Heart Foundation started 2021 off with an impactful Listening Session with the Food and Drug Administration (FDA) Center for Drug Evaluation and Research Division of Diabetes, Lipid Disorders, and Obesity (DDLO) on Homozygous Familial Hypercholesterolemia (HoFH) on January 4. Kate Robinson … Read More →
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Disclaimer: This entry is meant to give you some ideas about what to do if you’re bored during the pandemic (or when you can’t leave the house much). Always listen to the medical officials’ recommendations about … Read More →
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
You will learn fast that when it comes to FH you very often don’t take just one medication. You take several. You don’t follow up with just one test. You follow up with multiple tests (blood tests, imaging, … Read More →
When the Family Heart Foundation asked me to write Avery’s story for Rare Disease Day, I felt an immense amount of pressure to get it just “right.” It’s such an important story and I know with this fast-paced world, getting people to stop scrolling and read past the title would be difficult. … Read More →
Tom knew, for as long as he could remember, that almost everyone in his family had very high cholesterol. Both of Tom’s uncles had multiple heart surgeries and strokes before the age of 50. That was normal for his family.
When Tom had a heart attack at the age of 29, he and his wife Rachelle were … Read More →
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
In some ways, 4 years seems like yesterday. And in most of others, the past 4 years since my open-heart surgery feel like a lifetime. I am not the same person I left on the other edge of that precipice. I never will be. … Read More →
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Happy New Year to all and here’s to much health, first. Here’s to everything else, second!
If you have read my blog before and if you are an FH patient yourself, you already heard me say this and you already know … Read More →
Blog Post from My Journey with Familial Hypercholesterolemia and Heart Disease
Having a more-or-less terminal disease (isn’t life one, too?) makes you appreciate every new day that lies in front of you. From the first breath you take when your eyes peel open and you look at the window … Read More →
