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5 Ways to Get Involved in the Ankylosing Spondylitis Community
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Ankylosing spondylitis isn’t particularly well-known or understood, which can make many people with the condition feel like no one understands what they’re going through. And dealing with unpredictable symptoms like joint pain and stiffness can make you feel alone or isolated from friends and family. But managing ankylosing spondylitis is more difficult when you try to do it on your own. That’s why it’s important to connect with others who are also living with the condition.
“It’s crucial to have some sort of support system in place,” says Elin Aslanyan, director of programs with the Spondylitis Association of America (SAA) and editor-in-chief of Spondylitis Plus. “It’s sometimes a lifesaver when you learn you really aren’t alone in managing this life-long condition,” she says. “That others before you have gone through what you’re now going through, and can offer lessons learned, hope, and a compassionate ear can be very helpful.”
Here are five ways to get involved in the ankylosing spondylitis community:
1. Get Social
Social media outlets such as Facebook, Instagram, and Twitter have created safe places for people living with conditions such as ankylosing spondylitis to share their experiences, connect with other people going through similar situations, and gain peer support. “Isolation is often a big issue when managing a chronic illness like spondyloarthritis,” Aslanyan says. “Often just hearing that others understand and can relate is a relief.”
For Jen Dredge, a Salt Lake City resident with ankylosing spondylitis who often feels alone in her battle, getting involved in the ankylosing spondylitis Facebook community has been a game changer. “The Facebook groups I’ve joined have been so helpful in learning about new ways to cope or manage different symptoms,” she says. “People share what’s worked to relieve their pain, what hasn’t worked, what their doctors are prescribing them. It’s been incredibly helpful.” The SAA also has a Facebook group where people can connect with each another. Just remember to talk to your doctor before trying anything you read online. What works for some people may not work for you.
2. Hit the Boards
The SAA has free message boards where people can post questions and comment on others’ posts. “The online spondylitis community can be a very supportive place,” Aslanyan says. As with any online message board, always be wary of meeting someone in person, and suggest a meeting place that’s in public or at a scheduled support group.
3. Join a Support Group
While online social media groups and message boards can often be the easiest way for people to connect, in-person support groups are great because they can help you connect on a more personal level. “Our organization started as a support group, and we have never forgotten that or lost touch with our roots,” Aslanyan says. “Each support group listed on our website today started thanks to someone with spondyloarthritis contacting us, saying that there’s a need in his or her community for peer support, and that they’d like to start a support group. We work with them to make that happen.” Ask your doctor to recommend support groups in your area.
4. Raise Awareness
Raising awareness of a disease such as ankylosing spondylitis, which affects approximately 2.7 million Americans, according to the SAA, can not only help you meet other people living with the condition, but it can also provide a feeling of empowerment. After seeing how few people actually knew what ankylosing spondylitis was and how little research was being put towards curing the disease, Dredge decided to host a fundraising event. “I wanted to bring awareness to the disease so that people understand it exists,” she says. “You have all these people living with ankylosing spondylitis, but there’s no talk of it, which does no one any good.” The event aims to raise money towards research for curing ankylosing spondylitis.
Community events likes walks, runs, and bike rides are another great way to raise awareness and money for ankylosing spondylitis and to build up your own support network. If you can’t participate, sponsor someone who can or volunteer at the event.
5. Become an Advocate
Getting involved in advocacy efforts can help you feel like you’re taking an active role in improving your life and the lives of others with ankylosing spondylitis. Research advocacy efforts promote public awareness and education, improve access to quality healthcare, and support public policy that affects people with ankylosing spondylitis.
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