Learn to be a Health Advocate on Capitol Hill like this #BloodClot Survivor

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Follow the advice of blood clot survivor Todd Robertson to raise awareness and make positive changes to your condition.

Here at HealthCentral, we know you want to live a life beyond your illness, maybe even achieve goals that others with (or without) your chronic illness wouldn’t even achieve. But what if that goal was actually inspired by your state? What if years of living chronically had you wondering, “Why didn’t I know more about the risks and warning signs before I was diagnosed?” And how come there are so few a) useful resources; b) current studies in progress; c) effective awareness campaigns; and d) local events where chronic peeps can meet, mingle and fuse collective power?

If this sounds like someone you know, then you might be a natural health advocate. So how do you go from sitting on the couch to generating national, if not global, press for your condition? How do you become a force to be reckoned with? To guide your efforts, we’ve assembled a team of professionals to help you take the steps you need to become a chronic mover in this four-week series. Ready to tap into your power? Let’s go.

Meet “Everyone” Todd Robertson

Eleven years ago, kayak and canoe instructor Todd Robertson, now 58, of Des Moines, IA, experienced his first life-threatening blood clot after he ‘ripped’ his leg in a severe boat accident. After that initial scare, he experienced three more clots, none of them triggered by injury, before finally being tested for Factor V Leidenan inherited blood clotting disorder that is present in about 5% of the general population, according to the Cleveland Clinic, and is more common in people of northern European ancestry.

Now a six-time thrombosis survivor who takes blood thinners daily, Robertson is passionate about raising awareness about blood clots, which affect some 900,000 Americans each year, according to the Centers for Disease Control and Prevention (CDC), and are responsible 100,000 annual deaths from strokes, pulmonary embolisms and heart attacks, many of which are preventable. If you want to know how to become a lawyer, just ask Robertson, who went from being just another guy who saved his life in the ER to a moderator and administrator of a dozen social media sites on the subject2021 ambassador for world thrombosis dayand the man of the moment since he joins the National Blood Clot Alliance help promote National Blood Clot Awareness Month in March.

Clorinda Walley

Courtesy of subject

Meet Clorinde Walley

Clorinda Walley, who has 26 years of experience in the health sector and more than 13 years in strategic philanthropy, is the charity’s president and chief executive. good days. An ulcerative colitis warrior, she’s the mastermind behind it National Chronic Disease Daywhich went from a brilliant idea in the boardroom eight years ago to being promoted by 30 US governors, who each signed official proclamations to recognize the day statewide.

Held annually on July 10 to symbolize the seven top 10 (7/10) deaths in the United States that are caused by chronic diseases, most of which are preventable, according to the CDC, the purpose of the event is to raise awareness of the many lifestyle changes that can be made to stop the disease before it strikes, thereby saving valuable research funds for conditions that cannot otherwise be prevented. Do you want advice on integrating your health problem into the national dialogue? Walley is your wife. From tapping into social media influencers to courting influential lawmakers, she has the right moves to get the conversation started.

Week 1: Connect to your feelings and to others

Robertson, a widower, admits he didn’t take his blood clotting disorder very seriously until he had his first colonoscopy in 2017, when he was mistakenly asked to stop his medication for a while. a few days before the routine procedure. “Three days later I had my first, and so far only, pulmonary embolism,” he says. “It went through my heart and into my lungs. I thought, ‘Wow, that’s an aggressive disorder. I could have died. It woke me up. The experience, he says, “made me the activist I am now.”

It also left him terrified. “I was freaking out, obsessed and scared it would happen again,” admits Robertson, who began taking his blood thinners religiously at the same time each day, with food. He first contacted his GP, who ‘connected me with a counselor specializing in health-related anxiety’ before he was diagnosed with health-related post-traumatic stress disorder (PTSD) . “I got counseling for nine months,” says Robertson. “I learned management tools to control my anxiety and see things differently. It opened a new door for me. I discovered the meaning of my life: to raise awareness. I had been through hell and was blessed with no long term damage. I thought, ‘I’m going to use it to help other people.’ That’s what I did.”

What you will need:

  • A social media account: Robertson started on Facebook, where he searched for online support groups. “I wanted to talk with other people who had been through something similar,” he explains. “I came in as a patient at first, sharing my story.”

  • Your unique story: Sharing your experience is a perfect first step, says Walley, who believes that sharing personal experiences online can eventually lead to meaningful change, as evidenced by her organization’s use of Twitter, instagrama Blog, and other platforms to further the mission of National Chronic Disease Day. “It starts with one voice,” she says. “There is power in numbers, and social media can amplify your voice.”

Be ready to open up

Sure, some people are happy to talk about themselves (all day). But for others, opening up about a health issue can feel scary, embarrassing, or awkward. Know that the more you share, the more you will find other people willing to share back. Robertson’s story immediately resonated with others logging on across the country, and even the planet. “The next thing I know is that I am giving my opinion and guiding people who have experienced the same mental anguish throughout their journey. I have a big mouth and I use it! he said with a self-deprecating laugh.

When he first opened up to others online five years ago, he didn’t know how this “big mouth” would lead to much larger roles with major advocacy groups that shared the same goal: educate people about the dangers of blood clots to prevent them.

Understand your anxieties

To successfully reach others, you must first connect with yourself. Research shows that a wide range of health conditions, from cardiovascular disorders to stomach ulcers and arthritis, can lead to high anxiety. If you suffer from worry or depression because of a recent (or even not so recent) diagnosis, or if you constantly search for health information online and ask for a battery of tests to be performed (even when your doctor says you are fine), help is at hand, according to a recent report in Harvard Health Publishing.

As Robertson did, seek out a therapist who specializes in health-related trauma and anxiety, which are highly treatable. Talk and behavior therapy can improve your outlook, as can medication, according to the same report.

find your friends

Sharing your fears and experiences with others who are in the same boat – the perfect metaphor for Robertson, who, when not advocating in person or online, spends a lot of time paddling the rivers of the Iowan – could be part of your personal empowerment plan, too. So get out your laptop, type the name of your condition on Facebook or Instagram, and do a search with the word “support”. You may be surprised by the outpouring of empathy and guidance you receive and give back.

Lauren Paige Kennedy

Meet our writer

Lauren Paige Kennedy

Lauren assigns and edits articles in HealthCentral’s 90+ condition categories. She’s been writing and/or editing health content for nearly 20 years and she’s interviewed some of the biggest names in Hollywood, music, sports, publishing and politics, almost always with a focus. health oriented. She was co-founding editor-in-chief of WebMD MagazineChief Editor of Washington Flyer, and director of corporate copy for Condé Nast Media Group. His work has appeared in WebMD Magazine and webmd.com, The Washington Post, US today/weekend, Neurology Now, Brain + Life, women’s health, fitness for men, WWDstyle.com, Washingtonian, Travel + Leisure, FinancialTimesand many more.

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