How Do I Connect with Real People Living with AxSpA?

Navigating life with axial spondyloarthritis (AxSpA) can be scary or confusing, especially when going through it alone. After hearing those words “You have AxSpA/AS,” it is hard to know where to turn when all the information is so new and unfamiliar. You want to talk to a real person living with axial spondyloarthritis, but you do not know where to find them!

The good news: You do not need to know someone with AxSpA to hear real-life experiences, have your fears heard, and get your questions answered! You just need AxialSpondyloarthritis.net.

How do I connect with real people on AxialSpondyloarthritis.net?

Most people start by reading our articles about life with AxSpA, lifestyle adjustments and coping, and treatment experiences from the people who know it best: our AxSpA patient advocates. Nearly all of our articles on this website are written by someone with experience living with AxSpA, caring for a loved one, or as a healthcare provider or community health worker. Other writers on our Editorial Team bring the latest news and research updates about AxSpA to the community.

Here are some articles that our readers recommend:

• Getting Diagnosed with AxSpA: Why Does it Take So Long?
• My Diagnosis Story: “We Can’t Tell What’s Wrong With You”
• Women Don’t Get AS? That Old Story Needs to Go!

Signing up for our e-newsletter will make sure you get the latest articles and updates straight to your email inbox each week.

Forums and more

Articles are just the tip of the iceberg! You can also ask any questions you may have about AxSpA using our forums. Using the forums is a great way to get answers to any of your “Is this normal?” questions and hear directly from those who have been through it.

Forums are another way to dive deeper into a conversation geared around a specific topic. For example, this forum is a place for people to discuss dietary or nutritional adjustments they have made since living with AxSpA, while this thread focuses on how people are coping with fatigue.

Community stories

Have you ever wondered, “Am I the only one dealing with this?” or “Has this happened to other people too?” On AxialSpondyloarthritis.net, you will also find community members who have submitted their own stories, written from their own experiences and perspectives.