一份指南，告诉医生和家长在川崎病孩子成长过程中可以做些什么

在一次医学院的讲座中. 塞缪尔·龚得到了一个重要的教训:他需要去看心脏病专家.

蹒跚学步时, 龚得了川崎病, 一种常发生在儿童身上的原因不明的疾病. He doesn't remember being sick, just the years of follow-up that stretched into his teen years.

And the handoff from his pediatric doctors to adult experts was virtually non-existent, he said. "The emphasis was never placed on just how important it was for me to follow up with someone."

这可能会对龚造成危及生命的后果, who is now a resident in internal medicine at Scripps Clinic and Scripps Green Hospital in La Jolla, 加州. He's also co-author of a new scientific statement from the 美国心脏协会 that hopes to protect other Kawasaki disease survivors.

这份声明周一发表在《线上娱乐电子游戏网站》上 美国心脏协会杂志, 详细说明帮助病人的步骤, their parents and pediatric caregivers prepare for the transition to adult care. It also seeks to make adult cardiologists more aware of the specialized attention someone with a history of Kawasaki disease needs.

"What we're really aiming for with this paper is to build bridges" among all those parties, 合著者博士说. 阿德里亚娜Tremoulet, a professor of pediatrics and associate director of the 川崎病 Research Center at the University of 加州 San Diego. 她称这是对川崎病患者的一种伤害, "then send them off into the world not understanding that they may have a life-threatening illness."

川崎病在日本最为常见, 在哪里，每100个孩子中就有1个在10岁生日前患上这种疾病. 美国的利率.S. 大概是十分之一吧. 仍然, it is the most common cause of heart disease in children that isn't a congenital heart defect, 根据声明.

症状包括发烧, 皮疹, 肿胀手脚肿胀, 眼白发红, 颈部腺体肿胀，舌头发红, 嘴唇和喉咙.

它很少在短期内致命. But the disease can cause bulges, or aneurysms, in arteries that feed blood to the heart. Those aneurysms often disappear, but patients face a long-term risk of them returning. 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 had such aneurysms.

在儿童, 川崎病的护理通常由一个团队监督, 包括普通儿科医生吗, 儿科心脏病专家和儿科传染病专家, Tremoulet说. 但是，向成人护理的转变往往受到两个主要问题的阻碍.

首先是患者的年龄. 川崎病通常发生在5岁以下的患者身上, 所以他们不记得太多, 如果有什么区别的话, 关于生病.

之后, 这些孩子, 他们可能对自己的疾病知之甚少, come of age to find "there isn't really a system in place to care for them once they grow up." Even finding a cardiologist who understands Kawasaki disease can be a challenge.

在美国，预计每1600人中就有1人感染这种疾病.S. by 2030. 帮助这些病人过渡到成人护理, the statement calls for "a deliberate and coordinated" series of steps that include general education about the disease starting around age 12 and lessons in self-management skills for teens.

Tremoulet说:“我们的目标是吸引成年心脏病专家。. Pediatric cardiologists and infectious disease doctors know about Kawasaki disease, 她说. “他们很关心它. 他们能理解.成年心脏病专家需要接受“教育”, 感兴趣, 订婚了, 愿意把这些病人当作自己的病人, 然后能够提供最好的护理."

父母可以提供帮助, 她说, by talking with children about their illness and by not being "the ones that are the keepers of the information, 但是那些把它传递下去的人."

龚说，患者也需要积极活动. 随着年龄的增长, 他们需要实用技能的指导, such as how to get a prescription refilled and knowing what to do if they experience concerning chest symptoms.

为他, 他知道自己得了冠状动脉瘤, but was a typical college-age student: "We kind of feel like we're invincible at that age.“我在医学院上了一堂关于川崎病的课, 接着是与演讲者的对话, 让他意识到他需要去看心脏病专家.

Tests revealed his aneurysms had grown to a size where he needed to start taking blood-thinning medication to lower the risk of developing a dangerous clot. “说实话, it's quite possible that my pediatric cardiologist may have intended for me to be on medications previously,他说. 但如果发生了这种情况，这个信息并没有被理解.

He encourages fellow patients to make sure they understand their condition and, 如果他们还没有心脏病专家的话, to gather as much of their medical history as they can and connect with one who understands Kawasaki disease.

正如他在声明中所写的那样，任何病人都不应该被忽视. 他说，他的结果可能是灾难性的. “我真的很幸运."

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