After my diagnosis of ankylosing spondylitis (AS), I realized didn’t know anyone else with the disease. I was feeling exceptionally lost and alone. I turned to YouTube for community and education, and it was super helpful.
First, I could watch people with AS perform stretches and yoga moves! It’s one thing to read about a cat stretch, but it’s another to watch someone with limited mobility modify a yoga movement for someone like me.
Also, I could watch people talk about their experiences with ankylosing spondylitis. This was momentous to me! I could really hear and see the emotion of people speaking about their experiences with AS. They often reflected my own pain and confusion, and although it’s not easy to watch, it’s refreshing to see that I’m not alone.
Third, there are some excellent AS-focused lectures by leading doctors available on YouTube. Learning everything you can about your disease not only empowers you to ask the right questions when speaking to your rheumatologist and other doctors, it also allows you to understand the underlying mechanisms of the disease.
These are some of the videos I most learned from or enjoyed watching:
This AS Life is a website offering expert advice for ankylosing spondylitis patients. The video series This AS Life Live follows Imagine Dragons singer — and AS patient — Dan Reynolds as he discusses AS with various people who live with it. One of the videos in the series features a doctor who also has AS!
This useful video was created by Dr. Jo, a licensed physical therapist and doctor of physical therapy. The moves are tailored to AS patients and hit all the necessary spots: the upper and lower back, the hips, and the pelvis.
This video series (there are five videos) by Johns Hopkins Rheumatology offers insight into AS symptoms and treatments. These are particularly useful videos for the newly diagnosed and those who are in need of instruction.
There are plenty of videos out there from various AS patients’ unique perspectives. One of my favorites is this honest and vulnerable video by Zach Kornfeld of The Try Guys. Although this may not be the most uplifting video to watch, it is good to see another person’s perspective and to know that you’re not alone. His digital reach also means that more people are aware of AS — and this benefits all of us.
This is a helpful video for those with AS and lupus. It’s all about those items that may help you feel your best during a flare-up.
Bonus videos: Check out the National Ankylosing Spondylitis Society’s videos here.
Note: Ankylosing Spondylitis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Ankylosing Spondylitis News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to ankylosing spondylitis.