Contact: Nicole Napoli, nnapoli@acc.org, 202-375-6523

WASHINGTON (Feb 23, 2016) -

Tom Weiser of Bellefonte, Pennsylvania, has had two heart attacks triggered by a genetic condition called familial hypercholesterolemia, or FH, that causes extremely high cholesterol levels from birth. He’s made it his life’s mission to be a vocal and educated advocate for his disease and a positive example for his four children—one of whom has already been diagnosed with FH as well. Because of his dedication to living well with heart disease, Weiser is being recognized by the American College of Cardiology’s “I am CardioSmart” contest.

CardioSmart is the ACC’s patient education and support program. Its mission is to engage, inform and empower patients to better prepare them to participate in their own care. The “I am CardioSmart” contest recognizes individuals living well with heart disease. Weiser was among five finalists representing different heart conditions chosen by “I am CardioSmart” this year.

Before his first heart attack, Weiser said he would proudly tell people that it had been over 10 years since he had been to a doctor.

“I was the picture of good health; an insurance company’s dream,” he said. “Or so I thought.”

Weiser eventually did get a checkup, including a cholesterol screening, because high cholesterol ran in his family. It, not surprisingly, came back much higher than normal. A year after that checkup, Weiser started having chest pains at work. He wasn’t able to walk around without getting dizzy and was unable to catch his breath—he was having a heart attack.

After a trip to the emergency room, he was airlifted to a regional hospital to have an emergency stent placed in a main artery to the heart known as the “widowmaker” because blockages in this artery often lead to massive deadly heart attacks. His was 98 percent blocked. He was diagnosed with coronary artery disease, which combined with his FH, contributed to the blockage that caused his heart attack.

“It was a deadly combination,” he said. “My heart disease was described to me by comparing the inside of my arteries to a cobblestone road, and those little bumps grab the extra cholesterol in my blood causing the massive blockage.”

Despite being given a stent and placed on every drug available for his condition, he was told he’d be back in three years. He made it seven and then had another heart attack. He started a new round of more aggressive treatment but knew that more had to be done this time.

“I did the research; I asked the right questions; and when I didn’t hear the right answers, I asked again,” he said. “I became my most educated and most vocal advocate. I even joined the FH Foundation as an Advocate for Awareness to share my story with other patients and their health care providers.”

The FH Foundation is a nonprofit group dedicated to education, advocacy and research to save lives by increasing the rate of early diagnosis and encouraging proactive treatment of FH.

Weiser has changed his whole lifestyle after having children and a second heart attack. He eats a much stricter low fat diet and exercises more than ever before, even completing a 5K. He also requires aggressive medical management. He’s in constant contact with his primary care doctor and his cardiologists at Reading Hospital in West Reading, Pennsylvania, and Mount Nittany Medical Center in State College, Pennsylvania.

“My doctors and I communicate openly about what goals I have and what options are available to meet those goals,” he said.

Despite the countless doctor visits and medications, the part of Weiser’s heart disease journey that he said is the most difficult is knowing that his children may have to fight the same battle. Because FH is caused by a dominant gene, each of Weiser’s four children had a 50 percent chance of inheriting the disorder.

Approximately 1 in 250 people have FH, 90 percent of whom are not diagnosed. FH affects the body’s ability to manage the cholesterol it produces and causes very high LDL cholesterol from birth. The lifetime exposure increases the risk of early cardiovascular disease and can be the underlying cause of heart attacks, angina, and the need for bypass and stents. Adults with FH typically have an LDL over 190 mg/dL, and children with FH have an LDL over 160 mg/dL. People with FH almost always have a family history of early cardiovascular disease. An optimal LDL for an adult is less than 100 mg/dl and less than 110 mg/dl for children.

Weiser said he recommends people talk to their doctor if they think they might have FH because early treatment is important to help reduce the risk of cardiovascular disease. He said it’s also important to get your family members screened. Weiser has already had two of his four children tested and one has the disorder.

“My family may have inherited my disorder, but because of early diagnoses they have not inherited my symptoms,” Weiser said. “What inspires me is the promise of continued improvement in both drugs and medical procedures over the last 12 years of my battle and the knowledge that my 8-year-old daughter will receive a better fighting chance because of these advances and early diagnosis.”

The winners of this year’s “I am CardioSmart” contest were featured on CardioSmart’s Facebook page. The public was then allowed to vote on the most inspirational story and select the overall winner, which was Christian Jacobs of West Jefferson, Ohio.

The four other heart disease condition winners from the “I am CardioSmart” contest have been announced throughout February to bring awareness to heart disease during Heart Month.

To learn more about preventing or living well with heart disease, visit www.cardiosmart.org.

To learn more about Weiser’s story, visit www.cardiosmart.org/Connect/Patient-Stories/Tom-Weiser.

To learn more about heart attack symptoms, treatment and prevention, visit www.cardiosmart.org/Heart-Conditions/Heart-Attack.  

The American College of Cardiology is a 52,000-member medical society that is the professional home for the entire cardiovascular care team. The mission of the College is to transform cardiovascular care and to improve heart health. The ACC leads in the formation of health policy, standards and guidelines. The College operates national registries to measure and improve care, provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more information, visit acc.org.

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