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Making A Splash With Patient Advocacy

Making a Splash for Disease Awareness



Air-liquid interface culture of colonic epithelial cells; Clara Moon, Janssen R&D

May 19 marks World IBD Day, supporting the five million people worldwide who live with Crohn’s disease and ulcerative colitis, known collectively as inflammatory bowel disease (IBD). Here’s the inspiring story of Ryan Stevens, who has turned the trials of his challenging IBD into the raising awareness and supporting others who are affected by similar conditions.

“Maybe tomorrow.”

These are the words Ryan Stevens grew to dread saying when his young son would ask him to play. By the end of 2008, the effects of fever, exhaustion and diarrhea dramatically changed the life of this formerly active husband, father and business owner.

Even after his wife, Samantha, finally convinced him to see his doctor, Ryan continued to struggle.  Months of unsuccessful dietary changes, the eventual diagnosis of Crohn’s disease on his son’s birthday in March 2009, the loss of more than 60 pounds from his six foot, one inch frame — a full third of his body weight — and ongoing fever and fatigue turned the former college swimmer and triathlete into someone falling out of touch with friends and family.

Unresponsive to drug therapies and unable to find a treatment that worked for him, Ryan and his physician decided to begin a biologic therapy. He began sleeping better, feeling more energetic, and gaining control over his disease.

Diving Into Advocacy

With symptoms no longer dominating his life, Ryan returned to working out and spending time with people who matter most to him. And, that list has expanded significantly as Ryan has become an active and engaging IBD advocate, motivating others through sports and also through his blog, www.crohnsguy.com.

In August 2014, he attempted to become the first person with Crohn’s disease to swim 24 miles across Lake Erie in New York. Although frigid temperatures ended his quest after 17 hours and less than three miles from the opposite shore, he succeeded in raising awareness for IBD. The online documentary depicting his journey (see video below) is one of the reasons his story has already reached more than one million people.

“An estimated five million people globally have IBD, 1.6 million in the United States alone, but there was very little awareness and understanding about it online,” Ryan said. “I started my blog to talk about the swim and about IBD, because I wanted to contribute my voice, try to help and educate others who are going through similar situations, and attempt to clear up misconceptions around this complex disease.”

Indeed, an Everyday Health survey shows that 78 percent of Americans turn to online communities for support when dealing with ongoing health conditions. “People trust the advice of their peers as much as they trust the advice of their doctors,” says Caroline Pavis, Communication and Public Affairs Leader for Janssen. “Online patient health advocates are key stakeholders, so it’s important for us to connect with them.”

Ryan has since expanded his reach through social media, including Twitter chats that serve as a sounding board for other patients and create online buzz. He is also a founding member and active voice for the IBD Social Circle community of healthcare professionals, patients and caregiver advocates, and an enthusiastic participant in the annual HealtheVoices™ patient advocacy conference — both sponsored by Janssen.

“Remain positive and persistent,” Ryan counsels others with IBD. “Work closely with your doctor to find the right therapy for you, and get involved in a community that will offer learning and support as you navigate your journey.”

Below, watch the documentary about Ryan’s swim across Lake Erie to raise awareness about IBD.