Meeting date for 2019 coming soon!
My name is Debbie and I have Ankylosing Spondylitis and Crohn’s Disease. I came across the Spondylitis Association of America (SAA) website by accident one night, while surfing the internet. I was hoping to find something that would help me deal with the pain in my neck.
When I came to the message boards, I immediately started reading the posts by others, who like me, had one or more of the spondyloarthiritic diseases. It was an emotional experience. I finally found a place where I was “normal”.
When I was first diagnosed back in 1973, they knew very little about AS. The doctors told me that AS affected 90% men and 10% women. Why was I one of the 10%? They knew that the HLA-B27 gene played a role in AS. Years later, I discovered that I carried the gene, however, no one else in my family has AS.
Years ago, we did not have the internet. In the beginning, I was told to take 20 aspirin a day and deal with it. Not knowing what to expect, I had to learn as I went along. I learned to make adjustments to my daily routine. Some days, I was unable to even get out of bed. I needed someone to talk to about what I was going through. I felt so very much alone.
I didn’t meet anyone else with AS until 1987, and he was a guy. It was not until 2009, that I would actually talk with another female with AS. I had been told that I was the only female in Idaho, let alone Boise. So imagine my surprise when I found that there were others right here in the Treasure Valley who had AS. I sent a message to the support group leader and the rest is history.
I wanted to become involved with this group for a number of reasons. Some of the members had been recently diagnosed with spondyloarthritis, or have had it for a short period of time compared to my 38 years. I did not want others to feel alone, like I did. You are not alone, and you will get through this. It will not always be easy, but you can survive. I like knowing that there is a place where you can come and listen to others tell their stories, get the latest information, and cry and/or vent if needed. Best of all, to know there are others just like you….who know what you are going through.
Visit our careers page for available positions
16360 Roscoe Blvd. Ste. 100Van Nuys, CA 91406
(800) 777-8189 U.S. only
or (818) 892-1616*Please note: This is not a Crisis Hotline. If you are in a life-threatening crisis, please dial 911 for immediate help in the US. Please follow this link for crisis intervention resources.