Contact: Nicole Napoli, firstname.lastname@example.org, 202-375-6523
WASHINGTON (Feb 07, 2017) -
As a lifelong Spiderman fan, Jacob Burris has always been fascinated with the phrase “with great power comes great responsibility.” But he didn’t know how meaningful those words would be to his own life until he was diagnosed with a congenital heart defect (CHD) at 12 years old. Because of the great responsibility Burris has taken on since his diagnosis, the American College of Cardiology has named him its “I am CardioSmart” contest winner.
“I live CardioSmart by getting my regular checkups with my heart doctors, managing my blood pressure with medicine and taking my blood pressure every day to see if it changes.” Burris said. “I pay attention to my body and its limits. Getting the right amount of exercise and taking my medicine is demanding, but my biggest challenge to living CardioSmart is being different from others.”
Burris will be recognized during the CardioSmart Patient Engagement Reception, which is held in conjunction with the American College of Cardiology’s 66th Annual Scientific Session in Washington.
In May of 2014, Burris was undergoing a routine checkup when his doctor discovered that he had high blood pressure along with a heart murmur. Follow-up tests at Doernbecher Children’s Hospital at the Oregon Health and Science University (OHSU) revealed that Burris had coarctation of the aorta—a CHD that caused a kink in the aorta, making it difficult for blood to flow evenly throughout the body. The kink meant that Burris had very high blood pressure in the upper part of his body and very low blood pressure in the lower part of his body.
Aortic coarctation is among the most common CHDs. It is most often diagnosed in children or adults under age 40.
Surgery to repair the kink with a stent was scheduled for July 2014, but Burris’ doctors discovered that there was more than a kink causing problems for his heart. The aorta was nearly disconnected and would have to be surgically repaired. Burris underwent heart surgery the following September. The pediatric cardiac surgical team successfully grafted a carbon tube in place of the disconnected portion of his aorta.
“Now I’m called ‘The Bionic Boy,’” Burris said.
Instead of dwelling on being different, Burris decided to embrace his uniqueness and share his experience to help others.
“Now I connect to people by sharing my story,” he said. “Since I’m a CHD survivor, I believe I have a responsibility to help others with CHD.”
Through his advocacy work, Burris has met CHD survivors all over the world. He and his family created a website, www.jacobsheartstory.com, to tell his story and increase awareness about CHDs and the importance of monitoring one’s blood pressure.
In 2015, Burris had an extraordinary opportunity to tell his story and give back to the medical community that helped save his life. Nike invited him to design a shoe, hat and hoodie as part of their 12th collaboration with OSHU Doernbecher. Burris designed his signature shoe with a number of references to his experience: stylized circuitry represents his heart and shades of red and blue represent the blood flowing through his heart—while also paying tribute to Burris’ hero, Spiderman.
The front of the hoodie Burris designed features the phrase “Check Your BP” because “that’s how my doctors found out I had CHD and saved my life,” he said.
Sales from the Doernbecher Freestyle Collection have raised more than $11 million dollars for the hospital since 2004.
Burris has incorporated living CardioSmart into his everyday routine. An honor roll student, he plays baseball and participates in numerous heart health awareness events and programs.
“My motto is ‘Just Be Amazing,” he said, “because I think it would just be amazing if we could cure all CHDs.”
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, heart attack, coronary artery disease or stroke. Four finalists were chosen this year and their winning profiles were featured on CardioSmart’s Facebook page. A vote on the most inspirational story was held on Facebook, and Burris was selected as the overall winner.
The three other “I am CardioSmart” contest finalists are: Allison Jamison of Louisville, Kentucky; Roxanne Watson of Nanuet, New York; and Phillip Cartozian of Fresno, California.
To learn more about Jacob’s story, visit www.cardiosmart.org/Connect/Patient-Stories/Jacob-Burris.
To learn more about congenital heart defects, visit www.cardiosmart.org/Heart-Conditions/Congenital-Heart-Defects.
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, offers cardiovascular accreditation to hospitals and institutions, provides professional medical education, disseminates cardiovascular research and bestows credentials upon cardiovascular specialists who meet stringent qualifications. For more, visit acc.org.