FH Advocate for Awareness, Heather S.

Familial Hypercholesterolemia: 27 Years in the Making

Looking back, it was a sunny day in July that would change my family’s lives forever. My Dad had returned to the house after going for a walk. His face appeared pale, and he could not catch his breath. He had slight chest pains and mild back pains. My mom thought it would be best to take him to the emergency room.

I was 5 years old.

That day my father had his first heart attack at the age of 40. It would also be the same time that my father learned he had Type 2 Diabetes. His blood work showed a cholesterol level beyond what we thought was possible. His cholesterol level was in the 500s and triglycerides in the 1000s. After countless tests and scans, it was determined that he had arterial blockages, and he underwent a triple bypass.

My twin sister and I were 5 years old. I vaguely remember visiting my dad in the hospital. We were nervous and anxious to see him; to see the incision that would become a scar from just above the middle of his chest and travel downward. The red heart pillow on the side of his bed that he was supposed to hug when he had to cough or sneeze. The blue spirometer on the tray that he breathed into to help expand his lungs. It was here that our road to discovery, understanding, and recovery began…

It started with a hard look at my dad’s lifestyle and family history. Prior to his first heart attack, my dad had no signs or symptoms of heart disease or diabetes. His family history, however, told another tale. My grandfather had cardiovascular disease and three heart attacks prior to passing away at the age of 53. My grandmother lived with Type 2 Diabetes and had a stroke. My dad’s diet consisted of high fat and sugary foods with most of his physical activity coming from job inspections and a recreational bowling league.

Before my father was discharged from the hospital, the doctor told my mom to do her best to follow the diets from the American Heart Association and the American Diabetes Association. He wished us the best of luck and left us to our own devices. My mom and dad were left with the overwhelming task of learning to decipher this information and somehow implement those principles into our new normal. This was not an easy feat. My father was an electrician by trade. He worked in four different towns across New Jersey, often starting his day at 6:00 am and coming back later in the afternoons. Eating healthy on the road is always a challenge.

As our family learned more about cardiovascular disease and diabetes, my parents started to wonder about mine and my sister’s cholesterol levels.

At five years old, my family found out that my sister and I had cholesterol levels in the 200s. Together, as a family, we began to make healthier choices at home. We adopted a low-fat lifestyle and added in fruits and vegetables. We became involved in sports at an early age to help combat the elevating cholesterol levels. Plant sterols and bran muffins became part of the norm. We became more active as a family, going for walks after dinner or taking turns going for a bike ride with my dad.

I was 10 years old.

We were spending the day on the beach in Long Beach Island, New Jersey. Our family friends traveled down for a few days, and my sister decided to go back to the house with my dad for a little bit. The crashing waves could not drown the screams from my sister as she ran onto the beach saying Daddy had fainted. My mom and I ran to find my dad “coming to” and trying to prop himself up against a bench before the entrance to the beach. Thinking it was  low blood sugar, someone gave him orange juice. They called 9-1-1 and within minutes, he was whisked away. A week before his scheduled angioplasty, he had his second heart attack.

 

I was 13 years old.

October 10, 1998. My father had his third heart attack. Although he was strong, his heart was too weak, and he passed away at the age of 47.

A few years later our primary care doctor recommended we see a clinical lipid specialist in New York. He was knowledgeable and comprehensive in every way.

He was the first one to say “Familial Hypercholesterolemia” to us. We finally had an answer as to why our cholesterol levels were still increasing to the high 300s despite our healthy lifestyle and exercise habits. We finally knew that this was an inherited genetic disorder that played a role in our elevated cholesterol and gives us a predisposition to heart diseaseAt 18 years old, we started taking a statin and continued on our journey toward optimizing our health and wellness.

I was 27 years old.

It was because of my dad and mom’s persistence that my sister and I learned about FH. We were able to start prevention at an early age. After 27 years of living with FH, I discovered the Family Heart Foundation.

The wealth of information, support, guidance, and research that the Foundation offers is indispensable and an asset to individuals living with or affected by FH and high lipoprotein(a), also known as Lp(a). It is critical to help individuals living in the United States who remain undiagnosed and identify them before it’s too late.  I joined the Family Heart Foundation on their mission to help raise awareness and save lives.

My dad meant the world to me, and I hope to make his life my legacy by helping others discover and understand FH and Lp(a), and to have more days living happier and healthier lives.

 

– Heather S.
Family Heart Advocate for Awareness

 


 

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