It goes without saying that the Internet has changed the way we live our lives in ways both big and small—and how we approach healthcare is no exception.
Increasingly, patients and caregivers are turning to online health advocates and bloggers for much-needed moral and emotional support when it comes to navigating and living with challenging healthcare conditions.
To help create a forum for all these individuals to come together and share and exchange ideas, Janssen North America and Everyday Health, Inc., sponsor HealtheVoices™, an empowerment and leadership conference exclusively for online health advocates and bloggers.
Now in its second year, HealtheVoices™ 2016 is taking place April 15-17 in Chicago, with the goal of providing tools, resources and inspiration to help support online patient and caregiver communities. Attendees will have the opportunity to interact with other health activists and learn from experts in health, social media and advocacy.
The conference will feature both new and returning speakers, including Kevin “KevinMD” Pho, founder and editor of KevinMD.com; Amy O’Connor, editorial director of Everyday Health; and Laurel Netolicky, business development manager at WEGO Health who will be leading a discussion on how a community can help elevate a cause in advocacy efforts.
The Diagnosis That Changed My Life
The conference is personally very important to me: When I was just 29 years old, I was diagnosed with a blood clot in my leg, known as deep vein thrombosis, and a pulmonary embolism—a dangerous blood clot in my lung.
Within days, I went from being an active runner to fighting for my life in the hospital. As doctors worked tirelessly to figure out what was wrong with me, I wondered how a pain in my calf could turn into the most frightening experience of my life.
I was ultimately diagnosed with a blood-clotting condition called antiphospholipid syndrome (APS), a chronic autoimmune disease that requires long-term treatment with anticoagulants. While the exact prevalence of APS is unknown, it’s believed to be responsible for up to 1% of all blood-clotting occurrences.
And if a blood clot does occur in an individual with APS, it usually happens between the ages of 35 and 45, when the disease is most commonly diagnosed.
Once I was discharged from the hospital over a week later, I found myself feeling undeniably alone and overwhelmed by the prospect of the multi-year recovery period ahead of me. I was desperate for information and support, but there was little out there for people like we who had survived blood clots. So I created Blood Clot Recovery Network as a way to not only share my story, but to also provide an online community—and ultimately healing—for other people who shared my journey.
After writing about my recovery for a couple of years as one of the only venous thromboembolism advocates in the U.S., I was invited to the first HealtheVoices™ Online Patient Advocacy Conference last year.
It was one of the best decisions I ever made.
Finding Support as a Patient, Lending Support as a Leader
The conference had a profound impact on my ability to provide support to others by giving me the support I needed as a patient facing my own chronic condition, thanks in part to a discussion led by Jenni Prokopy of ChronicBabe.com who spoke about living an amazing life in spite of ongoing illness.
I also gained tools to combat compassion fatigue—something I struggle with frequently while managing a large community. And I learned about the value of humor and patient validation from keynote speaker Zubin Damania M.D. (aka “ZDoggMD”), the founder of Turntable Health. Dr. Damania is known for his musical parody videos that focus on how important it is for physicians to listen to their patients—which, in turn, inspired me to be more creative in my approach to talking about patient-centered care.
But even better than all of that, I made connections with other advocates and patients just like me who struggled with the same challenges, rejoiced in the same successes, and selflessly served others while trying to manage their own health. I left the conference feeing validated as a patient, recharged as a community leader and far from alone in my advocacy journey.
This year, I can’t wait to reconnect with the people I met last year, many of whom have become my own support system. And I’m excited to meet and collaborate with new advocates who will be attending this year’s conference.
I’m also personally looking forward to a discussion led by Jamie Heywood, co-founder and chairman of PatientsLikeMe, a forum where patients can connect and share their real-world experiences with one another on more than 2,500 diseases. I hope to learn more about how online forums can best provide patient support in the face of overwhelming illness.
HealtheVoices™ has become invaluable to my efforts to help other people recover from blood clots and I know, without doubt, this year’s gathering will continue to serve as a lifeline for myself and those I am fortunate enough to help.
Sara Wyen is the founder of Blood Clot Recovery Network, a blog that helps raise awareness about the signs, symptoms and risk factors of blood clots. In her role as the manager of communications and health marketing for the National Blood Clot Alliance, Sara provides daily support for individuals in the NBCA’s online support community, and regularly engages with audiences through relevant social media.