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WASHINGTON (Feb 02, 2016) -
Christian Jacobs has spent his entire life beating the odds on his heart health. He was diagnosed at age 2 with a rare form of familial hypercholesterolemia, or FH, a condition that causes aggressive and premature heart disease. When he was 19, he was diagnosed with coronary artery disease.
Now at 24, Jacobs is raising awareness about his condition and challenging the notion that heart disease only affects older people. Because of his work to help others understand how to discover and live well with this condition, he has been named the winner of the American College of Cardiology's "I am CardioSmart" patient contest.
Jacobs will be recognized during the CardioSmart Patient Engagement Reception, which will be held in conjunction with the American College of Cardiology's 65th Annual Scientific Session in Chicago.
At age 2, Jacobs's life became a series of medications, clinical trials and travel to doctors' appointments once doctors diagnosed him with homozygous familial hypercholesterolemia, the rare form of an otherwise common disorder. FH is an inherited genetic disorder that affects approximately 1 in 250 people, 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, known as bad 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 heart bypass surgery and stents. When a person inherits the gene from one parent, he or she has heterozygous FH, the more common form of FH. People with heterozygous FH are characterized by an LDL over 190 mg/dL in adults (over 160 mg/dL in children) and a family history of early cardiovascular disease. In Jacobs's case, he inherited the gene from both parents. He was born with a more severe form of the disorder called homozygous FH, a rare disease affecting approximately 1 in 160,000, and had extremely high cholesterol—over 950 mg/dL—as a toddler.
"My journey to being diagnosed with heart disease has been a long time coming," he said. "I have always felt the proverbial gurney behind me just waiting for an event to happen."
Through the years he met two major milestones—turning 13 and turning 18—both ages his parents were told he would never see. After graduating high school, he had his whole life planned out and looked forward to studying aviation and marching in The Ohio State University Marching Band. However, his annual checkup at the National Institutes of Health revealed he had coronary artery disease and four blockages in his heart over 75 percent. He was only 19 years old.
"I thought my life was over," he said. "I can honestly say that this was a point in my life that I honestly had no idea how to move forward."
Because of his diagnosis, Jacobs was forced to cancel his plans to study aviation after the FAA suspended his pilot's license. He was no longer allowed to participate in strenuous activities, which included giving up his dream of carrying drums in The Ohio State University's marching band.
"I came home and tried to figure out how my whole life could change in an instant," he said. "I made a decision at this point that this disease isn't going to beat me; I'm going to beat it."
After learning about the dangerous blockages in the arteries to his heart, Jacobs joined a Facebook group to connect with other people with FH. Two weeks after that he was on a plane to meet a group of FH patients in Boston. The FH Foundation, a nonprofit group dedicated to education, advocacy and research of FH, grew out of that meeting. Today, Jacobs serves as an honorary board member and the FH Foundation now has an active patient registry that tracks patients for future research, holds a yearly summit of FH experts from around the world, has a strong social media presence, and has a vibrant community of volunteer FH advocates raising awareness across the U.S. The organization's mission is to save lives by increasing the rate of early diagnoses and encouraging proactive treatment of FH.
"It has been my goal to help raise awareness of FH so that others have the fighting chance I've had," he said. "I want people to realize that some people are born with this genetic condition that increased their risk for early heart disease. There are effective treatments available, and you have the chance to fight it like I have. But first you have to know what you have. Get your cholesterol checked, get your children's cholesterol checked and know your family history."
Jacobs said his biggest support system is his mother, but he also relies on his team of doctors at The Ohio State University to work with him to stay on top of the latest news and therapies available. He said he is proactive about his health but credits his doctors with sitting down with him regularly to go over his health plan.
"It's hard to believe that I am now 24 with heart disease," Jacobs said. "But I don't feel like I have that gurney following me around anymore."
CardioSmart is the patient education and support program developed by the ACC. Its mission is to engage, inform and empower patients to better prepare them to participate in their own care. In 2013, CardioSmart established a contest to find individuals who were living well with specific heart disease conditions: congenital heart defect, heart failure, atrial fibrillation, previous heart attack or coronary artery disease. Five finalists were chosen this year—Jacobs was the coronary artery disease representative—and their winning profiles were featured on CardioSmart's Facebook page. A vote on the most inspirational story was held on Facebook, and Jacobs was selected as the overall winner.
The four other heart disease condition winners from the "I am CardioSmart" contest will be 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 coronary artery disease symptoms, treatment and prevention, visit https://www.cardiosmart.org/Heart-Conditions/Coronary-Artery-Disease.
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.