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Personal Stories

7 Health Advocates Who Are Determined to Change What It Means to Have a Chronic Illness

Living with a life-altering disease is undeniably challenging. But it can also be full of triumphs if you embrace one simple mantra: It's just a bad day, not a bad life.

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What’s the first thing you do when you have a health concern or question? Do you head to the web?

Sure, there’s Dr. Google, who we all know isn't the best resource when it comes to medical matters. But there’s also support available—in droves—from people who have been there.

Given that so many people are inclined to turn to the Internet for health advice, Rebecca Tillet Rebecca TilletRegional Pharmaceuticals Communication & Public Affairs Leader for the Americas, Regional Pharmaceuticals Communication & Public Affairs Leader for the Americas, had an idea: The company should host a convention to help online health advocates and patient bloggers expand their reach through skill-building, networking and direct learning from healthcare, advocacy and social media experts.

And that's how HealtheVoices was born. Now in its third year, the conference, which is being held this month in Chicago, draws participants from around the globe who are grappling with everything from autoimmune disorders to mental health conditions.

Also integral to the event's success: a team of seven advisors who are health advocates themselves.

"The advice and ongoing counsel we receive from our advisory board members is absolutely critical to ensuring the success of HealtheVoices each year—and to achieving our collective goal of creating a weekend of inspiration, connections and empowerment,” says Caroline Pavis Caroline PavisCommunications Leader, Janssen, Communications Leader for Janssen, who leads the conference.

At the heart of the conference is making connections and gaining support from people who are walking similar paths. People like this year's HealtheVoices advisors, who share with us what inspired them to get vocal about their health—and why they've all found a calling helping others just like them.

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    Meet Brooke Abbott, Inflammatory bowel disease advocate

    What inspired me to speak out ... In 2008, I was diagnosed with ulcerative colitis, an inflammatory bowel disease (IBD) that causes long-lasting inflammation and ulcers in the digestive tract.

    In 2012, my colon was removed and replaced with a J-Pouch, a surgically constructed internal reservoir. I never talked openly about my health struggles, but the night before my surgery, my mom suggested I come out of the "IBD closet" and blog about my journey.

    So I started writing about being a mom living with IBD at CrazyCreoleMommy.com, and people started to follow me and ask questions. All of a sudden, I was engaging in a community I didn’t even know existed. And once I was doing better, I felt compelled to fight for those who couldn’t fight for themselves. I'd found my calling.

    By this time next year, I hope to ... start a program to help kids and siblings of IBD patients. I also want to expand my events and speaking engagements across the country. I believe the only way to dispel the myths about IBD, and have more people understand it as more than a bathroom disease, is to share information.

    I hope that, through my work, the quality of life of patients with IBD is changed for the better.
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    Meet Kamaria Laffrey, HIV advocate

    What inspired me to speak out ... I was diagnosed with HIV in 2003, after giving birth to my daughter. The pregnancy was unplanned, and because of that, I kept it a secret for five months. As a result, I never got the standard blood tests, so I didn’t know I had HIV. But when my baby was born, both of us were tested for everything. The HIV showed up in her blood, too, so for the first year, I had to give her HIV meds and have her tested every three months. When the nurses eventually told me she was HIV-negative, I was beyond happy—but I was still dealing with my own shame and the stigma around the disease.

    In 2007, I was part of a National Healthy Start program, which is a health service dedicated to empowering mothers and helping their babies reach developmental goals. I disclosed my HIV status to the case manager assigned to me, and she embraced me.

    People living with HIV should feel like they can talk about it—and far too many people don’t even stick with treatment because they’re so ashamed.

    Soon after we started working together, I wrote about why living with HIV as a new mom was so frustrating, and my case manager encouraged me to help other women in the same situation.

    So I decided to share my story in a local newspaper. I still get messages from people who’ve seen that article, including moms who thank me because they were able to come out to their parents about living with a sexually transmitted virus.

    By this time next year, I hope to ... help further shatter the stigma around HIV, which prevents too many people from getting tested. People living with HIV should feel like they can talk about it—and far too many people don’t even stick with treatment because they’re so ashamed.

    I hope that sharing my story on my blog at my Kamaria Laffrey website and at speaking engagements will help me reach even more people.
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    Meet John Grohol, Psy.D., Mental health advocate

    What inspired me to speak out ... A few months after I started grad school, I got the news that my childhood best friend had committed suicide. I was devastated.

    After attending the funeral, I found myself lost in grief and depression. It seemed so senseless. Like almost anyone who’s ever lost someone to suicide, I thought to myself: If only I was there, I could’ve prevented this tragic and unnecessary death. We were best friends … I would’ve known.

    As I continued my psychology studies, I was resolved to change how people learn about mental health issues, and find a way to reduce the stigma associated with these disorders. So, 21 years ago, I founded PsychCentral.com, which indexes online support groups for those suffering from mental illness. I'm kind of like a middleman who helps provide the tools and resources to people with mental health concerns.

    By this time next year, I hope to ... top 100 million unique visitors on Psych Central. By helping people take control of their mental health in a proactive way, they will be able to live happier and healthier lives—not only for themselves, but also for their loved ones.
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    Meet Dave Bexfield, Multiple sclerosis advocate

    What inspired me to speak out ... I was diagnosed with multiple sclerosis (MS) in 2006 at the age of 37. It was a total surprise. I was an athlete, I traveled the world, I ran a successful magazine—I wasn’t prepared to handle an incurable, progressive disease.

    So I did what most people do these days: I scoured the Internet for every thread of hope. At the time, few MS websites existed, and those that did were largely depressing. That was unacceptable to me.

    The same week I was officially diagnosed (it took six months, due to all of the testing), I started ActiveMSers.org, which is dedicated to helping others with the disease stay active—physically, intellectually, socially—regardless of disability.

    People were asking where I’d been all their lives and were overjoyed at finding an optimistic website about MS. I clearly had struck a nerve.

    And I put my own humorous, optimistic twist on it to attract similar MS misfits. I’m not going to say laughter is the best medicine, but it sure as hell helps.

    I immediately got feedback from readers—people were asking where I’d been all their lives and were overjoyed at finding an optimistic website about MS. I clearly had struck a nerve.

    To date, the site has been viewed more than 10 million times and has thousands of members from around the globe.

    By this time next year, I hope to ... vastly grow my video efforts to better engage with my members—and showcase my goofy side. Before I attended HealtheVoices 2016, I was content to keep doing what I’d been doing. Afterward, all of my social media avenues got a much-needed shot in the arm. I can't wait to be inspired this year.
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    Meet Julie Cerrone, Psoriatic arthritis advocate

    What inspired me to speak out ... Not only do I have psoriatic arthritis and avascular necrosis, but I’ve also battled melanoma, complex regional pain syndrome, anxiety and depression.

    Due to these conditions, I spent over three years on crutches, months in bed and four years on disability. I thought I had lost it all—my life, freedom, relationships and career. What really helped me face these diagnoses and treatment regimens was reading blogs, participating in Twitter chats, joining Facebook groups and learning about how others have dealt with their conditions. These online support groups gave me hope in really dark times.

    It’s easy to feel like you’re alone when you’re dealing with a chronic condition, so I decided to help empower patients to live their best life and not let anything stand in the way of it through my blog, It's Just A Bad Day, Not A Bad Life. That's my mantra: It’s just a bad day, not a bad life.

    Now that I’m off disability, I realize those bad days have helped set me up to live a pretty fantastic life. I once looked at my health as a hindrance. Now I look at it as an asset. Not only can I bring my IT and business background to the table to help people as an advocate, but I can also bring my healthcare and patient expertise. Through my bad days, I’ve found my life’s work.

    By this time next year, I hope to ... write a book! I want to share my story in a way that provides actionable steps for any chronically fabulous (as I like to call us!) patient.
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    Meet Todd Seals, Prostate cancer advocate

    What inspired me to speak out ... In 2006, I was diagnosed with stage IV prostate cancer with metastasis in my bones, lungs and lymph nodes. I have battled this disease for almost 11 years now—longer than any of my doctors originally predicted. Early in my diagnosis, there were other patients I met in online forums who encouraged me along the way. Most are gone now. I guess that's what first brought me to advocacy: I am now the one who encourages and gives hope to others through my Living With Prostate Cancer blog.

    By this time next year, I hope to ... change the perception of what a late-stage cancer diagnosis means. I want people to realize it’s not necessarily a death sentence.

    My blog is all about living with prostate cancer. The focus is on the living—not the cancer.

    I was a teenager when Nixon declared a war on cancer, and Hollywood got involved, producing movies like Brian’s Song. The recurring theme in all of them was death. I grew up believing cancer meant a death sentence.

    So many people still feel this way. And until cancer is a footnote in history, I will continue to instill hope and inspire as many people as I can. My blog is all about living with prostate cancer. The focus is on the living—not the cancer.
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    Meet Anna Norton, M.S., Diabetes advocate

    What inspired me to speak out ... I was diagnosed with type 1 diabetes in 1993, just two weeks before beginning my freshman year of college. Adding diabetes to the stress of a new adventure was not ideal. Late nights studying, going out, pizza at 2 AM—none of that is great for a person living with diabetes. I took care of myself as best I could, but I was torn between being a “regular student” and being a compliant patient.

    In 2000, I found myself at a crossroads with my health and decided to advocate for myself. I demanded conversations with my healthcare provider, and I asked for help managing my diabetes.

    Six years later, I started a blog. When I got pregnant in 2007, I wrote about being pregnant with diabetes, which was a great outlet for me during a scary and isolating time. And when I learned about DiabetesSisters, an organization dedicated to supporting and educating women living with diabetes, I immediately knew I wanted to work with them—today, I’m the CEO.

    I’ve learned there’s so much power in sharing my story and resources, as well as learning from others walking the same path.

    By this time next year, I hope to ... reach other women in my community. As a person living with type 1 diabetes who also happens to be Hispanic, I feel I’m poised to reach more women in African-American and Hispanic communities and empower them to get better health outcomes.