Family Screening
Family Heart Ambassador - Brianna's Story - Living with FH

HoFH Awareness

Reflections from the 2024 HoFH Gathering

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I am one of the 1 in 300,000 individuals in the U.S. living with homozygous familial hypercholesterolemia (HoFH). HoFH is a rare disease, and when you live with a rare disease, it can often feel lonely – by definition not many others have the same disease. So, you can imagine how impactful it was … Read More →


Chloe shares about living with HoFH

A Conversation with Chloe: Living with HoFH

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Chloe’s family has made advocacy a family tradition. Her father, Scott, and her brother, Luke, are Family Heart Foundation Ambassadors, and her sister Hannah will be training to be an Ambassador soon! Scott even decorated his beloved bike to transform it into the Motorcycle that Saves Lives. Today, … Read More →



Have You Ever Thought You Might Have FH? – Madi’s Story

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Madi always knew high cholesterol ran in her family, but she assumed everyone had it under control. That’s why one day in 2016 caught her so off guard. She was just 23 years old, but she knew she was having a heart attack.

“It kind of happened out of nowhere,” says Madi. “I had no symptoms … Read More →


When Going Vegan Doesn’t Lower LDL: Liz’s Story

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Liz found out she had high cholesterol when she was just 10 years old. “It wasn’t too shocking,” she says. “We knew my dad’s family had a history of high cholesterol and heart disease.” Her uncle passed from a heart attack when he was just 39, and Liz remembers her grandmother’s cholesterol … Read More →


Laurence and a waterfall

These Are My People: Laurence’s Story

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“I think the hardest part of my story is that I didn’t know anything. I’m still coming to grips with that.”
Laurence grew up in Ireland and came to the US in the early 1990s. He always considered himself a very healthy person with an allergy problem. “I look after my health, I do all my … Read More →


Mackenzie's Story

Life After Your Loved One’s Heart Attack

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I’m not sure where this story starts. When I ask myself, what’s life been like since my mom’s heart attack, I have to ask, which one?
Does the story start with the heart attack she didn’t know she had? Does it start with the one she nearly didn’t survive? Does it start with her emergency … Read More →


Cat Davis Ahmed's Familial Hypercholesterolemia Story

Remembering Tom Davis

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He worked hard to outrun FH

This is my first Father’s Day without my dad, Tom Davis, and I miss him.
He was 82 when he died December 7, 2022. It was only five months after my mom, Judy, passed away. Like so many of the families I have worked with at the Family Heart Foundation over the past 10 years, … Read More →


Family Hypercholesterolemia story - Isabelle B.

Why I Race: Knowledge Brings Positive Change

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As a new team member of the Family Heart Foundation, I was thrilled to join an organization aligned so well with my goal to make a positive impact on peoples’ lives.
Not only was I eager to help others, but joining the Family Heart team in March of 2023 meant I would have even more opportunities … Read More →


Family Heart Advocate Daniel H.

Why I Race: My Story Could Have Been Different

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My mother died of a heart attack when she was just 46 years old. It was the late 1960s, and I was a young kid – just 13 years old. At that time, we were only beginning to learn the connection between cholesterol and cardiovascular disease. Stents were still in development, and medical science was … Read More →


Family Heart Advocate - Charlotte M.

Not only did she give me life, but she also saved it

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After you’ve lost your mom, Mother’s Day is complicated. Sadness and “what if’s” mix with gratitude and “I remember when’s.” My heart swells with love for the woman I was fortunate enough to call “Mom.” And even though I talk about her in the past tense, my swollen heart still … Read More →


Living with elevated Lipoprotein(a)

It Wasn’t a Panic Attack. It Was a Heart Attack.

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Jenny’s Lp(a) Story

I thought it was a panic attack. In fairness, I was only 41. A nonsmoker. A longtime vegetarian with good cholesterol numbers. As physically active as I could be while working a full-time job and wrangling a toddler.
But what happened in October 2019 wasn’t a panic attack. It … Read More →


Personal Story - lipoprotein apheresis

Advocate for Awareness Aletha shares HoFH Story

Life After a Heart Attack - Ally's Story

Stacey's story

Familial Hypercholesterolemia story

Personal Story from Advocate for Awareness of living with Homozygous Familial Hypercholesterolemia

Jessica’s Story

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For Seven Years I Thought I had a Perfectly Healthy Child

When Jessica’s father died of a heart attack at the young age of 54, she didn’t know the reason could be genetic. “He was a stubborn man who never went to the doctor,” explains Jessica. But when the doctors told her that her total cholesterol … Read More →


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Kathleen

Last year, at age 54, my life dramatically changed. While on my daily 4-mile walk with my dog, I felt a prickly sensation creep up my chest and neck. The tingly feeling wasn’t painful, but it got my attention and I knew something wasn’t right. At the urging of my husband and mother, I decided to go to the emergency room, “just to be safe.” After running multiple tests in the ER, one of the doctors assumed I must have a nerve problem in my neck, since I am both thin and physically fit and wanted to send me home. READ MORE →

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Allison

If you were to check out my Facebook page, I probably look like a pretty typical 41-year-old woman. I married my high school sweetheart, and in July we will celebrate 20 years of marriage. I have two beautiful children, one boy and one girl, between whose activities I am constantly shuttling back and forth. I have a rewarding career in higher education at an amazing university, and my weekends are full of activities like golf, swimming, home projects, and playing with kids and dogs. Idyllic, perhaps, and it is. But what you might not know from first glance is that, in addition to all those things, I am also living with Homozygous Familial Hypercholesterolemia (HoFH), a lifelong, and life-threatening, condition. READ MORE →

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Marie

I should be dead. I always knew my cholesterol was high. At 25 years old, my first blood test showed a total cholesterol of 410, but no one made a big deal of it. I lived a healthy, active lifestyle. I had never been overweight, and I had been a vegetarian most of my life. What was there to worry about? READ MORE →

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Natalia

I am a 26-year-old dance instructor, and I have FH. I am not the face most people see when they think of heart disease, but I want that to change. I want people to see the face of an active adult who eats healthy and wants to live. I want them to know I’m beating the odds every day and still doing the things I love. My FH has never stopped me from teaching dance, running my studio’s competition team, and leading a normal life. READ MORE →

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Ali

I was certain I was doing everything right. I lived with a strict diet of grass-fed meats, organic vegetables, low carbs and absolutely no gluten, refined sugars or inflammatory foods. I exercised regularly, never smoked and was adamant about getting my seven hours of sleep every night. So when I decided to have my cholesterol checked at age 29, I was positive I would have the stellar results I expected. READ MORE →

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William

I’m a college professor and administrator. Cardiovascular disease has been part of my life since I suffered my first heart attack, at age 38. My wife was pregnant with my third daughter, and the thought of not seeing her grow up scared me. My girls needed their dad. READ MORE →

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Debby A.

Debby was seven years old the last time she touched her father’s flat top hair cut. “Mom and Dad were going out dancing and we were left with Bonnie the babysitter,” recalls Debby. The next thing she remembers is waking up in the middle of the night to the news that her father had a massive heart attack and passed away. He was 30 years old and had Familial Hypercholesterolemia, though he never knew it. READ MORE →

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Jane S.

New treatments available today for Familial Hypercholesterolemia (FH) can help save lives. If these types of treatments were available before my father died at 57, he may have walked me down the aisle. My daughter and niece could have known their grand-daddy. I may have had the chance to know my own grandfather, who died at 40. Today, because of the treatments available, if I am lucky I will live to be a grandmother. READ MORE →

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Laura

Unlike many people with heterozygous FH, I have known I had FH for almost my entire life. My paternal grandfather died from a heart attack in his mid-30s and by the time I was born and my dad was 30 he had already been diagnosed with high cholesterol and it was assumed that it was a family trait that could be passed on to my brother and I. READ MORE →

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Stacey

Stacey has known she had familial hypercholesterolemia (FH) almost her whole life. Her father had his first heart attack when he was 36 and sadly, he died of a heart attack when Stacey was just 6 years old. READ MORE →

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Judy

I am originally from East Africa, Kenya. Born and raised there until 1998 when I migrated to USA. My family has a very strong history of high cholesterol inherited from my father’s side. As a result, my family has experienced numerous heart attacks and even deaths due to FH. READ MORE →

Scott

I always knew about my family history of heart disease, my maternal grandfather had a heart attack at age 50 in 1965 and died of a heart attack at 65. My mom had an angioplasty in 1993 at age 51, then at age 60 she had a double bypass. At age 27, my high cholesterol was discovered by having a routine physical. READ MORE →

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Cat

I am Catherine Davis Ahmed and I am a mom with two girls – 8 and 11.  I first found out I had high cholesterol when I was in high school.  Without having a name for it, I knew that it was something that I inherited from my father’s side of the family.   My family’s story is a happy one so far – thanks to the wonders of modern medicine and individual efforts to take care of ourselves. READ MORE →

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Kristen and Chad

My name is Kristen Gradney and I am the Clinical Nutrition Manager at Our Lady of the Lake Regional Medical Center in Baton Rouge, LA. I am married to Chad, who was diagnosed with FH last year, and the mother of the busiest, sweetest 2 year old I know, Hunter. Two of the most special men in my life are currently affected by FH, therefore I want to help others like them to know that this disease exists and with early diagnosis, knowledgeable medical staff, and aggressive treatment, their story can be told differently. READ MORE →

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Christian

At the age of two, Christian was diagnosed with Homozygous FH (HoFH), a very rare form of FH, impacting roughly one in a million people worldwide. When Christian was diagnosed, his LDL-cholesterol was 957 mg/dL. As a child he was treated with multiple medications, none of which worked very well. At 9, he briefly underwent LDL-apheresis (a dialysis-like procedure, which removes LDL-cholesterol from the bloodstream), but unfortunately his little arms could not handle the needles used in this treatment. For Christian, having FH was a very lonely experience. In middle school he was teased mercilessly because of the large orange cholesterol deposits on his elbows, hands, and legs. No matter what the weather, Christian wore long sleeves and pants. READ MORE →

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Kathy

I found out I had high cholesterol when I was pregnant with my second child. I was put on statins right away, along with binding agents. I enrolled in a drug testing trial at University of Iowa for 10 years. At the end of that period, I received a letter telling me that they were sorry they were unable to help me decrease my cholesterol levels, and that I shouldn’t expect to have my first heart attack until my early 50’s. Both my doctor and I were surprised at the letter. At 34 years old, I had never been informed that my high cholesterol could potentially lead to heart disease. I was always assured that I would be on the best medication available and, if I ate right and exercised, there was no problem. Life went on – taking medication, exercising, eating well, no issues. Supposedly. READ MORE →