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.
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.
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?
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
- What is Familial Hypercholesterolemia
- What is Homozygous Familial Hypercholesterolemia (HoFH)?
- Homozygous Familial Hypercholesterolemia
- Do I have FH?
- What are the risks with FH?
- Women with FH & Pregnancy
- Children with FH
- Men with FH
- Tools and Resources