Despite hypertrophic cardiomyopathy, 'you can still be you'
![艾娃·范德米尔(右)在2020年接受了植入式心律转复除颤器后参加了半程马拉松比赛. (Photo courtesy of Ava Van der Meer)](/-/media/Images/Around-the-AHA/Ava-Van-der-Meer_SC.jpg?h=600&w=800)
Growing up, the outdoors was Ava Van der Meer's happy place. Whether running, hiking, swimming or playing lacrosse, 活跃让她感觉良好,也让她找到了归属感.
But when she was diagnosed with hypertrophic cardiomyopathy, Ava, who was 23, thought her world was crashing down.
"I didn't believe it (the diagnosis) because I felt completely fine," recalls Ava, 现年27岁,正在加州大学读研究生, Berkeley. “我刚跑完马拉松,除了从16岁起就开始监测的心脏杂音外,我之前没有任何健康问题或症状. I thought it was some mistake."
Hypertrophic cardiomyopathy 心肌变厚变硬是一种遗传性疾病吗, making it more difficult for the heart to pump blood. An estimated 1 in 500 people in the U.S. 患有肥厚性心肌病,但这种疾病经常被误诊. It can affect people at any age.
症状包括呼吸短促、胸痛、心悸、疲劳或昏厥. 患有HCM的人患中风和猝死的风险也更高. 事实上,这种疾病是导致年轻运动员猝死的主要原因之一.
Five months after receiving her life-altering diagnosis, Ava developed ventricular tachycardia, 一种导致心脏不规则快速跳动并可能导致心脏骤停的疾病. By this time, Ava was being treated at the University of California, San Francisco's HCM Center for Excellence, where she was told that unless she did something, she had a 5% chance of dying in the next two years.
“这让我开始思考对我来说重要的是什么,以及我愿意在生活中承担的风险," she says. "Being active was nonnegotiable."
艾娃开始研究这种情况,并寻找其他患有HCM的年轻人. In her quest for answers, 她转向社交媒体寻求联系,并从其他患有这种疾病、过着积极生活的年轻女性那里找到了灵感.
“对于许多患有HCM的年轻人来说,很难找到榜样,”艾娃说. “但我的发现给了我希望,我仍然可以继续做我自己."
Because of Ava's quickened heartbeat, 她在加州大学旧金山分校的医生建议她接受手术,在她的胸部植入一个植入式心律转复除颤器. The small, 电池供电的设备持续监测心跳并施加电击, when needed, to restore a regular heart rhythm and prevent cardiac arrest. 艾娃在2020年接受了手术,只在医院住了一晚.
"I'm grateful to have it; it gives me a peace of mind that if I do go into cardiac arrest, it will save me," she says.
尽管有了ICD,艾娃还是担心她的病情会继续恶化. There is no cure for hypertrophic cardiomyopathy, although medications such as beta-blockers, 钙通道阻滞剂和抗心律失常药物二丙酰胺可以减少心脏的剧烈收缩. This year, 美国食品和药物管理局批准了一种叫做mavacamten的药物, although it's recommended for patients with advanced HCM.
To manage her condition, Ava makes sure she stays hydrated and moderates her activity level, although she continues to run and play sports. 她给新确诊患者的建议是,在全国40多家HCM卓越中心中寻找一家,与医生坦率地讨论如何在不影响生活质量的情况下控制疾病.
“我想让其他年轻人知道,即使患有HCM,他们仍然可以保持活跃,”艾娃说. "It's definitely scary, but there's ways to make it work. You can still be you."
The Hypertrophic Cardiomyopathy Association 参加美国心脏协会的肥厚性心肌病倡议,以提高HCM的认识和护理.