Ankylosing spondylitis (AS) is a rare condition that can affect many parts of your life. Here are some resources you can tap for information about latest treatments, tips on managing your symptoms, or just a sympathetic ear.
Support groups are great ways to connect with people who are going through similar experiences. Some groups meet in person. Others may be online only, which allows you to join no matter where you live. Many sources might be able to refer you to a support group. They include your:
- Doctor
- Local hospital, including for veterans
- Library
- Community health center
- Research university
When choosing a group, consider what the group focuses on, how it meets (online or in person), and who leads the group. See what works best for you.
When you use blogs or online communities, you may find people’s accounts of their own experience. But don’t take what they say as medical advice. Always talk that over with your doctor. Also ask yourself these questions:
- Who runs or created the site? Are they selling anything?
- Does it make claims that sound too good to be true?
- Is the information up to date, reviewed, and based on scientific research?
Nonprofit Organizations
Professional groups that focus on specific medical conditions can be valuable links to the greater AS community. Check their websites to see if they host or sponsor patient groups, events, or seminars in your area. They also may offer videos, podcasts, a directory of assistance programs, or online forums.
You may want to check out:
- Spondylitis Association of America:https://spondylitis.org/
- Arthritis Foundation:https://www.arthritis.org/diseases/ankylosing-spondylitis
- Arthritis National Research Foundation:https://curearthritis.org/ This organization includes all forms of arthritis. You can search for “ankylosing spondylitis” for specific information on this condition.
- National Institute of Arthritis and Musculoskeletal and Skin Diseases: https://www.niams.nih.gov/health-topics/ankylosing-spondylitis This link goes to the Institute’s section on ankylosing spondylitis.
Blogs
Online blogs, including some run by major AS organizations, include stories from other people who share your condition. Apart from first-hand accounts, some of these blogs are filled with useful information about AS diagnosis, treatment, or the task of living with AS. Here are some to explore.
- Spondylitis Association of America: Community Voices: https://spondylitis.org/resources-support/support-resources/community-voices/
- Arthritis Foundation: Living with Arthritis: https://blog.arthritis.org/living-with-arthritis/tag/ankylosing-spondylitis/
- Canadian Spondylitis Association: Your Stories: https://spondylitis.ca/support-community/your-stories/
Online Communities
Most national and local AS organizations have social media accounts. These and other online communities can offer a wealth of good information and supportive resources. Just be sure to check with your doctor before trying anything that you find online.
Facebook: This social media platform allows you to connect with others who live with AS. Some Facebook groups may be private, so you may have to request to join.
https://www.facebook.com/spondylitis/
https://www.facebook.com/AnkylosingSpondylitisSupport/
https://www.facebook.com/groups/6856176878/
KickAS: A message board for people who have AS.
https://www.kickas.org/ubbthreads/ubbthreads.php?ubb=postlist&Board=1&page=1
Reddit: This site connects you with others in the AS community. You can join forums and learn more from people who share your experiences. You can post your tips and read posts from others.
https://www.reddit.com/r/ankylosingspondylitis/
Popular hashtags: #ankylosingspondylitis, #arthritis, #chronicpain
It’s important to ensure that content you find on Twitter, Instagram, and other social media sites is reliable. Information online is often incorrect. Make sure that you:
- Trust your gut. If the account looks or feels shady, it probably is.
- Look for verified accounts. Major organizations have a specific symbol that ensures they’re real and not a spam account.
- Ask yourself the same questions about the quality of the information that you would for anything you read online.
