好，你们所有budding, badass Norma Raes of bettering community health out there! It’s Week 3 of our advocacy series, where you learn to spin your chronic condition into public awareness (and, hopefully research and policy change) gold.
如果您一直在关注到目前为止，那么您在第1周就学会了tame your inner fears在征服世界之前。在第2周，您挖掘了内部社交媒体战士遇到志趣相投的慢性窥视，以激发它们和您自己，以建立重要的联系并在线启动您的名字（并进入平流层）。
Now, for Week 3, you’ll be shown how to leverage your growing digital presence into a force to be reckoned with on Capitol Hill, where our lawmakers (only occasionally, let’s be real) gather; funds for research are allocated; health proclamations are made; and national disease days are officially born.
还在我们身边吗？还在抽吗？凉爽的。我们也是。就像一个糟糕的80年代摇滚乐队曾经在广播中唱歌一样：是时候飞了。
爱荷华州加入大联盟
Which brings us to托德·罗伯逊（Todd Robertson）, 58, a six-time blood clot survivor. (Read about the genetic disorderFactor V Leiden, which predisposed him to thrombosis, in our first installment of the series.) After a near-lethal pulmonary embolism (PE) nearly took him down in 2017, he felt determined to save lives (and, yes, take names) when he learned that blood clots kill 100,000 Americans each year, many of those deaths preventable, according to the American Heart Association.
您可能会在他的家乡IA的Des Moines（甚至在华盛顿特区的K街上）经过罗伯逊（Robertson），而不是为他迅速变成的推动者而拼凑他。但是在调节了十几个左右之后blood clot support groupsonline, a coalition of his 50K social media followers nominated him to be the2021 World Thrombosis Day (WTD)大使。（请滚动卷！）那是顶级黄铜National Blood Clot Alliance (NBCA)took notice.
Partnering With Power
提示莱斯利湖57岁，NBCA的志愿者总裁，在她的另一人生中是曼哈顿Invus Financial Advisors的联合创始人和董事总经理。在呼吸困难的“纽约市一家知名，备受推崇的医院”之后，她于2018年加入了NBCA董事会。她说，她的症状很快就会出现，“到我不得不抓住建筑物侧的地步，才能回到我的公寓。”
她报告说，一旦进入急诊室，“他们花了九个小时才能弄清楚我有一个血块。”医生给了三个妇科检查湖，告诉她她患有肌瘤，并在“有人决定检查我的肺部”时即将派她。这就是医生发现血块的方式 -许多of them of them, in fact, throughout both lungs. She was diagnosed with an无端的PE，这意味着她没有明显的危险因素来发展一个，并且被接纳为ICU，幸运地活着。
When Lake was stabilized and discharged a few days later on anticoagulant meds, “I was dismayed that I left with no information about blood clots.” (A serious oversight, given that, according to research, unprovoked PE has a higher rate of recurrence than regular PE.) “I work with NBCA because I had to take a journey on Google to find out what had happened to me,” she adds. “I found the Alliance, and they were the ones who gave me the information to get my life back on track.”
In her current, prominent position at NBCA, she knows she can be a voice of change so others don’t have to experience what she went through—a life-threatening health crisis that even some of the nation’s top physicians weren’t prepared to recognize.
让我们大声
Lake wanted the nation’s lawmakers to hear her story—and Robertson’s, too, once he flew onto her radar as last year’s WTD ambassador. Together, they began discussing ways to raise awareness, culminating in a March talking tour, timed to国家血块意识月。By speaking with those holding the purse strings for federal research grants and public service campaigns, Lake and Robertson hope fewer people would have to suffer from misdiagnoses and lack of access to importantblood clot treatments。目的：谈论血块的危险和问题的范围，鉴于凝块不仅可以导致PE，还可以导致PEstrokeandheart attack, too, affecting some 900,000 Americans annually.
没有人说通往华盛顿的道路将是蛋糕步行。没有人承诺您会像乔治·克鲁尼（George Clooney），安吉丽娜·朱莉（Angelina Jolie）或其他好莱坞名人一样，穿着最聪明的眼镜在国会前作证。当罗伯逊（Robertson）和莱克（Lake）制定了一项计划，以吸引美国立法者的注意，这是他们学到的一些教训：
Align Your Interests:与NBCA这样的著名卫生组织联合起来，这些组织具有联系，并与您有帮助。您不必一个人这样做。实际上，您将成为一个团队。
坚持不懈：You know you have a message to spread and a mission to honor. So don’t you dare give up after the first door closes to you. Knock again. No one answers? Do it a third time (or look for the metaphorical open window to get inside).
变通：Is your senator or congressperson totally AWOL, or simply tough to reach? Did you expect anything less?Reach out to your elected official’s office.Arrange meetings or casual chats with top aides, too, who have the ears of the besuited-and-pinned women and men in power.
待命：在这个时代，握手并不总是是达成这笔交易的原因。（谁想要细菌？没人，那是谁。）因此，如果向您提供远程选项，请抓住它。缩放对话是面对面的，必要时，即使是在面对面。您只需要准备好并可以接听电话即可。
Join us next week, as we put the final touches on your patient-to-advocate transformation. We’ll outline how you can take the next step in your mission, and set yourself up for success.
Blood Clot Statistics:American Heart Association. (2020.) “After years of decline, death from blood clots on the rise.”https://www.heart.org/en/news/2020/08/17/after-darys-of-decline-death-death-rate-from-lung-clots-clots-on-the-rise
无主动的PE（1.）：医学档案。（2021.）老年人无端的PE：发病率和进步。”https://www.ncbi.nlm.nih.gov/pmc/articles/pmc7959013/
Unprovoked PE (2.):JAMA Network。（2015年。）“肺栓塞的治疗持续时间。”https://jamanetwork.com/journals/jama/fullarticle/
