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Seth GinsbergPhotograph courtesy of Seth Ginsberg

Seth Ginsberg

Health Advocate

At 28 years old, Seth Ginsberg is not your typical arthritis sufferer. He has lived with a form of the condition called spondylarthritis for half of his young life. Simple activities such as climbing stairs or opening a jar cause him a great deal of pain. Every two or three weeks, the condition flares to the point where every joint in his body aches.

Fortunately, contracting arthritis isn’t the only thing Ginsberg did at an early age. Since he was a freshman in college 10 years ago, the Ramapo native has served as president of CreakyJoints, a Web site he conceptualized and founded as a source of support for arthritis sufferers of all ages. CreakyJoints houses message boards, news features, advice from medical experts, and blogs, including one by Ginsberg himself. From the organization’s offices in Upper Nyack, Ginsberg runs a forum for 33,000 members — and growing.

The spark for the Web site sprang from the loneliness Ginsberg felt during his first weeks at Babson College in Boston in 1999. “It was three o’clock in the morning. I was laying on my bunk bed, awake, and I felt miserable. I was alone, so far away from my support,” Ginsberg recalls. “I got out of bed and e-mailed a guy named Lou Tharp. I had interned for Lou over the summer before college at his marketing firm in Upper Nyack. He was the only guy I could think to e-mail at the time. I said, ‘You know, there’s got to be something we could do to bring people together in a positive environment.’ Just a couple of hours later, he wrote back, ‘I’d like to be a social entrepreneur. Let’s do this together.’ ”

Other online support sites for arthritis existed at the time, but CreakyJoints soon found a niche with its serious-but-lighthearted tone. A purposeful levity fills the Web pages of the site, as demonstrated by its name and playful slogan (“Bringing arthritis to its knees”). The philosophy follows Ginsberg’s own approach to living with the condition. “We’re not a pity party,” he says. “It’s a place to come and leave feeling better than when you came. Humor has a lot to do with that.”

“The nature of arthritis is that there are good days and bad days. You have to take advantage of the good days”

Today, CreakyJoints has grown into the flagship site for the Global Healthy Living Foundation, an enterprise Ginsberg also runs. The foundation includes support Web sites for diabetes, asthma, and anxiety and depression. As part of his role as spokesman for the organization, Ginsberg travels the country, organizing events in which physicians and other experts instruct guests on how to adopt a healthy lifestyle. “Nothing can replace human contact,” he says. CreakyJoints has held the events in more than 120 cities and towns nationwide, including Nyack, Jefferson Valley, and the Capital Region.

As he looks toward the organization’s future, Ginsberg sees promise in a new initiative called Hand in Hand for RA, which promotes volunteerism as a way for arthritis sufferers to transcend the helpless feeling that often accompanies the condition. CreakyJoints is partnering with drug companies Genentech and Biogen Idec on the program. The three organizations conducted a survey that showed 72 percent of arthritics wanted to do more in their communities. Participants in Hand in Hand for RA can log on to www.creakyjoints.org to post stories and photos from their own volunteer efforts, and to glean inspiration from other people with arthritis who have lent their time to a cause.

The initiative is derived from Ginsberg’s own experience. As a teenaged, newly diagnosed arthritic, he found a pastime — and, more importantly, a purpose — in volunteering at Helen Hayes Hospital in West Haverstraw. He still volunteers today as a companion for an elderly woman. “Every other Saturday, I go over to her house for two or three hours and we play cards,“ he says. “I just kind of keep her company, and in return, she cracks me up. She is literally the funniest person in the whole world.”

In his free time, Ginsberg tries to stay active. He excelled in athletics before he developed arthritis, and even now he occasionally sneaks in nine holes of golf, despite his lack of mobility. “The truth is with golf, if you slow down, you can actually improve,” he says. This positive, can-do attitude infuses much of Ginsberg’s everyday speech. “The nature of arthritis is that there are good days and bad days,” he says. “You have to take advantage of the good days.”

Beside that cheerful disposition, however, resides an intense determination to overcome the limitations with which arthritis has shackled him. He draws inspiration from his mother, who has suffered from arthritis for decades and who took Ginsberg’s diagnosis especially hard. “I remember lying in bed at 13 and hearing my mom sobbing down the hallway to my dad, saying, ‘I can’t believe I gave this to my child,’ ” he says. “That was actually when I realized that it was up to me to make this all okay, and I really believe it is okay now. CreakyJoints and a lot of what we’ve done comes from that moment.”

» Next: Meet Maribel Pregnall

 

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