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 Lianne & Scot Gensler
Tuesday, May 01, 2018
Imagine Dragons lead singer Dan Reynolds discusses living with spondylitis with rheumatologist Lianne Gensler and her husband Scot.
Dan: Welcome to This AS Life Live!, which brings together people with AS to share our stories and inspire each other to live our best lives. Today I’m sitting down with Dr. Lianne Gensler, a rheumatologist, and her husband, Scot, who lives with AS. I hear the Genslers have a lot of great tips, so let’s get started.
Dan: So tell me about some of the symptoms and signs of AS.
Lianne: I think the hallmark symptom is going to be pain, and a certain kind of pain that’s different than you might get just from having wear and tear on your back. So inflammatory back pain, which is this hallmark feature, is really back pain that starts at a young age, has been going on for at least three months, is worse in the morning when patients wake up, gets better as patients move around, particularly exercise is beneficial, and is worse with rest. The cardinal symptom of that is waking up in the second part of the night. So those patients that go to bed okay, but then at three, four, five a.m. they’re waking up in pain and stiff, that really suggests that there is inflammatory back pain.
Lianne: There are other signs that are helpful in suggesting the disease. Of course, one is the genetic marker that’s seen in most patients with the disease and that’s HLA-B27. There are other blood tests, though, that can be done to look for inflammation, and if those are elevated, they aren’t in all patients, but if they’re elevated they do suggest inflammation that’s active. In addition, sometimes patients have other organ systems that have been affected, like the eye inflammation that happens in AS called uveitis or iritis. People can have gastrointestinal inflammation with Crohn’s disease or ulcerative colitis, or skin inflammation called psoriasis.
Dan: That’s funny because both of us, during the entire time she’s telling the symptoms, we’re like, yep, yep, that’s me! [laughter]
Scot: In terms of diagnosis, I think one of the things that’s interesting about this disease is that, you know, I think psychologically we’re all apt to just ignore symptoms, especially ones that seem commonplace, like back pain that kind of comes and goes and manifests itself in weird ways. But this is a disease that actually gets significantly better when you lean into it and try to learn as much as possible, and figure out ways to treat it and remedy it.
Dan: What do you wish that more doctors knew about AS, or said about AS?
Scot: It’s a relatively common disease, I think, right? What is it, one percent? I went to an orthopedist and a family doctor for physically related things, especially in high school, especially when I had a lot of hip pain. And I don’t think anyone knew to ask the questions to, you know, increase the likelihood, or decrease it that I have AS. Right? So I think that’s the, that was biggest thing for me, is more docs, I think, should be educated about what questions to ask, especially when young people present with these kinds of problems, um, that can help you get to a diagnosis sooner. And also, the education around what the disease means and how to treat it, and how to think about it.
Dan: I hope you find the tips from Scot and Lianne as helpful as I did. Now I’m off to meet more people living their AS life. As always, I encourage you to visit ThisASLife.com for other episodes and share them on social media. See you next time.
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