This is the first episode of The Ankylosing Spondylitis Podcast. It is just a short overview of what is to come.
Hello, and welcome to the inaugural episode of Voices of AS, as many will know this as stands for Ankylosing Spondylitis. This is a disease I've had for over 35 plus years,
I'm 48, soon to be 49 and was diagnosed at 14. So it's something I've dealt with for a long time and doing this podcast has really been something in the back of my mind.
I wasn't sure how I wanted to structure it, what I wanted to structure it about. So in this episode, I want to kind of lay down what I want to do with everybody or for everybody and you may hear a little bit of wandering, so I apologize as I kind of collect my thoughts. I'm doing this really just off the top of my head just talking to everybody. I want to be completely honest and brutally honest for some people that are new to the disease.
There's a lot of information floating around out there and the one thing about Ankylosing Spondylitis is nobody reacts the same way to the disease. What bothers me might not bother you. I see people make comments and some of the Facebook threads that says, “do this and you'll feel great.” Well, you know, that's great that it worked for you, but it might not work for everybody else. So I always want to temper or temper this stuff to say that what I'm doing here is what works for me.
Now I'm going to in the future interview other AS patients, you know, people that have Ankylosing Spondylitis and we're going to hear what they do and what works for them.
Again, we're not doctors seek out you know, the best rheumatologist you can best medical doctor you can and you have them diagnose what works best for you. It could be biologics, it could be aspirin, it could be something as complete as a hip replacement. It's what is your journey with AS, our journeys are just to try and provide some connectivity. So You know, idea that there's others out there that are dealing with this. And as a community, we should step up, be there to support each other. When I was diagnosed at 14, there was no other person that I knew that had Ankylosing Spondylitis. There was no Internet. I couldn't just go on and Google it and, and figure out Oh, this is what I'm dealing with. This is what I could expect. I had no idea. The doctor put me on some meds and away I went to live my life, going down to yearly to check in with my rheumatologist and unfortunately, my version of AS was one that progressed very, very quickly through my teens and 20s, so miserable times for me. By the time I was 31, I'd been through four hip replacements. Many of you are coming into this in the 30s in the 40s. And you're starting the process where there's fusing going on that I already had happen. So We all sit in different spots. But that doesn't mean we can't support each other and be there.
So, you know, many of us sit there and go, well what is AS, what is Ankylosing Spondylitis? So I pulled up the Spondylitis Association of America and I just want to kind of go through their definition of what Ankylosing Spondylitis is where the overview of it as many know Ankylosing Spondylitis, or AS, a form of arthritis that primarily affects the spine, all the other joints can become involved. It causes inflammation of the spinal joints that can lead to severe chronic pain and discomfort. In more advanced cases, it's inflammation can lead to AnkyJosis which is new bone formation in the spine, causing sections of the spine to fuse in a fixed immobile position. AS can also cause inflammation, pain and stiffness and other areas of the body, such as the shoulders, hips, ribs, heels, small joints, the hands and feet. Sometimes the eyes can become involved. This is known as iritis and rarely the last item is your heart can be affected.
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