Welcome to our virtual community! Start by browsing through the personal stories featured here.
We have organized these stories into two categories: Your Stories -- stories sent to us at the Spondylitis Association of America -- and selections from The Faces of Ankylosing Spondylitis project. You will also
find episodes of
AS Life Live!”
an online talk show for people with AS hosted by Dan
Reynolds – an AS patient and lead singer of the rock band Imagine Dragons.
We’d love your story as well! Send it to us at Programs@spondylitis.org
By Seth Ginsberg
I was 12 years old when I first started noticing symptoms of arthritis. Seventh grade was a busy time when I was very active and played in as many little league games as a boy could. At that time I was in two different little leagues–one through school, and another, more competitive league through the county. I would leave school games around the sixth inning and go to the second game; the pre-pubescent version of a sports all-star.
It was during a summer camp trip one rainy day, between the 7th and 8th grade, that we visited an indoor gymnasium with huge trampolines. I vividly remember the pain caused by those trampolines, wondering why everything from my back to my hips to my knees started to hurt. Thinking nothing of it, I kept going, only to find running around the field the next day equally uncomfortable.
Having an overprotective mother is one thing, but having one who has arthritis of her own and can recognize it in others is another, compressing the time between symptoms and diagnosis to literally a week. A lot of people aren't as lucky, and unfortunately a lot of children experience similar symptoms that are chalked up to "growing pains"–a common issue for a lot of active kids.
It was the autumn of 8th grade when I was diagnosed with juvenile undifferentiated spondyloarthropathy by a doctor named Thomas Lehman at the Hospital for Special Surgery. I did not test positive for HLA-B27, but the tell-tale sign was when he laid me down and banged on my heels, causing my hips to cry out in pain (in hindsight, making the trampoline the best foreshadow).
Treatment started off slowly, and steadily. As a boy I remember being unable to swallow pills, so liquid doses of anti-inflammatory medications were prescribed. Worst tasting medicine in the world! I experimented with many techniques, like holding my nose, or pretending I was a grown up drinking a shot of alcohol (ironic side note–many years later, when I did try tequila for the first time with a group of friends who couldn't stand the taste, I laughed and said "this is nothing compared to what I used to drink!").
For the next handful of years, there were many ups and downs. "Good days and bad days" was what I would endure, which conditioned me to enjoy the good days, and manage through the bad days. We escalated medications throughout the years, changing around NSAIDs, and adding sulfasalazine. Then there were the peptic ulcers and other intestinal side effects, which brought about more medications specifically for the stomach. It was a hassle at the time, having to take a whole bunch of medicine twice, sometimes three times a day–this one before that one, spaced out between this meal and for that reason. But it was something I grew accustomed to at a very early age, and always took my medicine very seriously; because if I messed up or missed a few doses, I was nearly guaranteed a really bad day. So I did what worked for me: staying diligent with things like packing the right doses, getting refills in time, and remaining positive.
I am happy to say that the past few years have been very good, physically and emotionally. After so many years of managing my arthritis, my pain threshold has calibrated very well, so it's for the worst of the bad days that I reserve the strongest treatments. My aches and pains come to haunt me usually at the worst time: my wedding week, while helping a friend in need, or after being stranded somewhere – but that's par for the course. Some would use the word "remission" to describe this state, but I prefer "truce" because my arthritis is never really gone. It rears its ugly head at the worst times, which is why I like that word. Having a wonderfully supportive and understanding spouse makes it a lot easier, because she goes easy on me when I hit a rough patch.
I have a deal with my arthritis: I get plenty of rest, eat healthy, stretch regularly, and work out in low impact ways as often as possible, and it (arthritis) sits quietly on the sidelines.
CreakyJoints was the natural extension of how good I felt when I helped others. It was during the third week of my freshman year at Babson College, when, at 3 AM one sleepless night, I felt vulnerable and confused. Here I was, 205 miles away from anyone who understood what I was or had been going through, all alone in a bunk bed, and yet knowing inherently that there are so many others out there with similar experiences. "There ought to be a way to bring people together, in a positive environment, where we can share our strength and experiences with each other." was the opening line in an email I sent to my high school internship boss back in New York, entrepreneur Louis Tharp. He wrote back that very morning "I would like to become a social entrepreneur, to help others. Why don't we start something together?" That afternoon, we had the framework for CreakyJoints mapped out, with the aim of creating an irreverent, humorous, and supportive community for everyone out there going through something similar.
The challenge we faced in the beginning was building a site that would appeal to both the young (like me) and the young-at-heart (hopefully everyone). Even though I was a kid, I have always been an old soul, and I knew that humor would help, as would a healthy dose of perspective, since "there's always worse."
CreakyJoints today is part of the Global Healthy Living Foundation, the 501(c)3 nonprofit parent organization. We are a community for patients, and by patients. The community has four areas of focus: education, support, advocacy, and patient-centered research.
Understanding our conditions, and accessing information from world renowned doctors to help everyone make better decisions.
Sharing strength and experience, to keep a positive mental outlook, because we've all "been there."
Because accessing the care we deserve is never a given, and we must overcome barriers both as a community and individually.
The most exciting component and next frontier for CreakyJoints. This is the hunt for the truth about what we're living with, and helping the world understand us better, through patient reported outcomes research.
Advocacy is very important to us. We appreciate that when you need to fight for access to care, it is usually at the time when you're least able to fight — because you're not feeling well! This is why we are always proactively working to improve access to care. Advocacy means education; it is helping people understand their rights as patients, and helping policymakers, regulators, and the public understand our needs as patients. Because so much of our healthcare system is governed at the state level, and each state differs slightly in its rules and regulations, we focus on each state individually.
We created Seth's 50 State Network to allow people the opportunity to get involved locally, within their home state. Through this program we train our “Super Advocates” to educate their state legislators and regulators about life with arthritis, and the challenges we face accessing care.
Super Advocates don't require an advanced degree! To become a Super Advocate, one must have a passion to help others and a willingness to learn about the process to do so. Through the 50 State Network, we allow people to advocate at the level and in the way they feel most comfortable.
The challenge we face today, in our 16th year, is meeting the needs of such a robust community, with so many people living with so many forms of arthritis. Their experiences are so varied, and the needs diverse. Some are anxious after a new diagnosis. Others feel vulnerable because they don't understand what's happening to them. And still others are in need of encouragement or support because they're being denied the care they need and deserve. Thankfully, technology can help, allowing us to engineer a dynamic website that is customized to meet these needs.
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