TUESDAY, Oct. 12, 2021 (American Heart Association News) – A lecture at medical school taught Dr Samuel Kung a vital lesson: he needed to see a cardiologist.
As a child, Kung suffered from Kawasaki disease, a disease of unknown cause that tends to strike young children. He doesn’t remember being sick, just years of follow-up that lasted until his teenage years.
And the transfer of his pediatric doctors to adult experts was virtually nonexistent, he said. “There’s never been an emphasis on how important it is to me to follow up with someone.”
It could have had fatal consequences for Kung, who is now an internal medicine resident at the Scripps Clinic and Scripps Green Hospital in La Jolla, California. He is also the co-author of a new American Heart Association scientific statement that hopes to protect other Kawasaki disease survivors.
The statement, published Monday in the Journal of the American Heart Association, outlines steps to help patients, their parents and pediatric caregivers prepare for the transition to adult care. It also aims to educate adult cardiologists about the specialized attention that a person with a history of Kawasaki disease needs.
âWhat we’re really aiming for with this article is to build bridgesâ between all of these parts, said co-author Dr. Adriana Tremoulet, professor of pediatrics and associate director of the University’s Kawasaki Disease Research Center. from California to San Diego. . She called it a disservice to give people excellent care for Kawasaki disease, “and then send them out into the world without realizing that they can have a fatal disease.”
Kawasaki disease is most common in Japan, where it strikes more than one in 100 children before their 10th birthday. The rate in the United States is about a tenth higher. Still, it’s the most common cause of heart disease in children that isn’t a congenital heart defect, the statement said.
Signs include fever, rash, swelling of the hands and feet, redness of the whites of the eyes, swelling of the glands in the neck, and redness of the tongue, lips and throat.
It is rarely fatal in the short term. But the disease can cause swelling, or aneurysms, in the arteries that supply blood to the heart. These aneurysms often go away, but patients run a long-term risk of them coming back. As a result, clots can form and block blood flow to the heart muscle, causing a heart attack.
The new report focuses on the transition from pediatric to adult care of young adults who have had such aneurysms.
In children, Kawasaki disease care is usually supervised by a team, which may include a general pediatrician, a pediatric cardiologist and a pediatric infectious disease specialist, Tremoulet said. But the transition to adult care tends to be triggered by two main issues.
The first is the age of the patients. Kawasaki disease typically strikes patients under the age of 5, so little or nothing is remembered about the disease.
Then later, these children, who are likely to have little understanding of their illness, mature and find “that there isn’t really a system in place to take care of them once they’ve got them.” will be great â. Even finding a cardiologist who understands Kawasaki disease can be a challenge.
The disease is expected to affect 1 in 1,600 people in the United States by 2030. To help these patients make the transition to adult care, the statement calls for a series of “deliberate and coordinated” measures that include general education on the disease from age. 12 and self-management lessons for adolescents.
âAnd we’re really aiming to hire adult cardiologists as well,â Tremoulet said. Pediatric cardiologists and infectious disease physicians know about Kawasaki disease, she said. “They took care of it. They understand it.” Adult cardiologists must become “educated, interested, engaged, willing to take these patients as their own patients, and then be able to provide the best possible care.”
Parents can help, she said, by talking to children about their illness and by being “not the keepers of information, but the handlers”.
Kung said patients also need to be active. As they get older, they need advice with practical skills, such as how to get a prescription refill and what to do if they experience pulmonary symptoms.
For him, he knew he had coronary aneurysms, but he was a typical college-age student: “We feel like we’re invincible at this age.” It took the medical school lecture on Kawasaki disease, followed by a conversation with the lecturer, to make him realize he needed to see a cardiologist.
Tests revealed that his aneurysms had grown to such a size that he had to start taking blood-thinning medications to reduce the risk of developing a dangerous clot. “Truth be told, it’s quite possible that my pediatric cardiologist scheduled me to take medication before,” he said. But if it did, the message didn’t.
He encourages other patients to make sure they understand their condition and, if they do not already have a cardiologist, to gather as much of their medical history as possible and to connect with someone who understands the condition. Kawasaki disease.
As he wrote in the statement, no patient should fall through the cracks. His outcome, he said, could have been disastrous. “I was really lucky.”
American Heart Association News covers heart and brain health. Any opinions expressed in this story do not reflect the official position of the American Heart Association. Copyright is owned or owned by the American Heart Association, Inc., and all rights are reserved. If you have any questions or comments on this story, please email [email protected]
By Michael Merschel