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From Empowering to Empowered – Experts by Experience

My story begins at a time when there was little information about celiac disease, and when going gluten-free was a trend or a lifestyle choice.

As leader of the Mayo Clinic media relations team 15 years ago, I became aware of how patients were increasingly using blogs, discussion boards, and other social networking tools to share information, find support, and learn more about diseases and health conditions. I noticed how social media were rapidly developing as the new “places” for patients to share word-of mouth-recommendations–an important information source for many patients.

Simply put, the technology and social media that people had used for entertainment, social networking, chat groups, were now being used as resources to get health information and support.

That's why Mayo Clinic decided to make an investment in social media, early on. Starting with Facebook in 2007, and moving quickly to YouTube, Twitter, and various blogs, Mayo Clinic was one of the first academic medical centers to establish “a thriving online patient community,” Mayo Clinic Connect.

It just made sense: if patients were using these platforms to discuss their health, then Mayo Clinic should share its expertise and empower patients with the knowledge to make good health care decisions. As we described it in 2010 when we established what has become the Mayo Clinic Social Media Network:

“Mayo Clinic believes individuals have the right and responsibility to advocate for their own health, and that it is our responsibility to help them use social media tools to get the best information, connect with providers and with each other, and inspire healthy choices.”

So I was a believer in the power and potential of social media in health care.

Then one day it got personal.

I had been donating blood regularly, and noticed that my hemoglobin was steadily declining, until finally it reached a level at which I was no longer eligible to donate blood. My primary care physician identified the underlying cause: celiac disease.

The diagnosis meant that any presence of gluten (a sticky protein found in wheat, barley and rye) triggers an immune response in my body, which damages the villi–finger-like projections lining the small intestine. With normal villi the small intestine's absorptive surface area is about the size of a tennis court; celiac disease reduces it to something more like a ping-pong table!

I had become anemic because my body wasn’t absorbing iron.

The good news about celiac disease is that for many patients eliminating all gluten from the diet can reverse intestinal damage. The bad news? At the time of my diagnosis, there wasn’t as much awareness of this disease, and very few restaurants served gluten-free meals.

My gastroenterologist, Joseph Murray, M.D., at Mayo Clinic is one of the world’s leading celiac disease specialists. Affable and plainspoken, he makes sure his patients understand “everything you always wanted to know about gluten but didn’t know to ask,” and he can explain all of the science behind celiac disease. See this helpful explanatory video I shot with him.

But what Dr. Murray couldn’t tell me was how to cope with celiac disease in my daily life, such as where to find a gluten-free restaurant when I was traveling. For that, I had to connect with fellow patients.

In those early years with celiac disease, I regularly used Twitter to crowdsource recommendations for gluten-free restaurants. I read blogs by other celiac disease patients; my wife also relied on these blogs and discussions as she was learning to cook gluten-free meals.

Thankfully, many restaurants serve gluten-free cuisine today, and you can find gluten-free products in grocery stores all over the country. With national chain eateries, food markets, farm-to-table and upscale restaurants becoming more gluten-aware, living with celiac disease has become easier–and much more manageable.

Yet, despite all the progress, we inevitably turn to the “experts by experience”–our peers, who live with the disease. Our online presence has evolved so much, that when we find people who are coping with similar illnesses, we connect with them. We reach out to fellow patients for support and insight–not only because their story sounds familiar, but their shared experiences help make sense of our health struggles.

It is with mixed emotions that we bring the Experts by Experience series to a close. But this is not the end of your stories. Your voice matters, and when you share your stories–the trials, the experiences, what you’ve learned on your journey to better health–you offer others hope and strength in knowing that they are not alone.

I am honored to write the final column–as a patient–for Experts by Experience. The series has been a wonderful collaboration between Inspire and Mayo Clinic Connect–social networks that recognize and value the power and potential of patient and caregiver stories to connect, teach, and improve health care.

 Experts by Experience is a collaboration between  Inspire and Mayo Clinic Connect, online support communities for patients and caregivers. By sharing their stories, patients and caregivers awaken, inform, and strengthen the capacity to partner in their care. The stories also help clinicians and non-medical professionals in health care implement patient-informed practices in their interactions and communications, by uncovering opportunities for quality improvement. The series showcases the value of shared experiences and features contributors from around the globe.

About the Author: Lee Aase leads Mayo Clinic’s Social & Digital Innovation team, which manages Mayo Clinic’s presence on general purpose social networks like FacebookYouTube and Twitter as well as its owned blog and community platform. Key sites include Mayo Clinic Connect, an online patient community, Mayo Clinic News Network, and Sharing Mayo Clinic, a patient stories blog. He also is director of the Mayo Clinic Social Media Network.

Editor's Note: -- Mayo Clinic and Inspire will release online in early 2020 a free compilation of all the Experts by Experience columns from 2019

Lee thank you for sharing your amazing and inspiring story!

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