Meetings offer education, encouragement, emotional support, and allow for open discussion about managing and living with spondyloarthritis.
Saturday, January 16, 2021
Reach out to St. Louis group leaders:
Phone (call/text): 314-200-5810
If you are in the St. Louis area please join our St. Louis Support Group Facebook page to connect with other Spondylitis folks in the area: Spondylitis Association of America: St. Louis
We meet on the third Saturday of the month.
I was diagnosed with Ankylosing Spondylitis at a young age. I consider myself to be fortunate getting my diagnosis at 12 years of age because it meant I could focus on taking care of myself as I got older. When my back was hurting at age 16, I knew why and I knew I needed to take a break. It also meant that I have had a long time to get used to my lifetime partner, Ankylosing Spondylitis.
For many years I took the “Live well and be well” path thinking as long as I took care of myself I will be fine. A few years ago, I realized AS is too aggressive for being treated with a positive mindset. I have tried various treatments in the forms of NSAIDs and Biologics, and other more natural treatments. I can say without a doubt, I am now quite experienced.
I have always had the desire to help other people like me. I figured why have all this real life experience if I can’t use it to help others. In 2007 I founded a Facebook based support group as my launching off point to reaching out to and helping my fellow Spondyloarthritis patients. Years later the group has over 15,000 members and is growing every day. While it is amazing to connect with people all around the world, I wanted to do more to help those in the St. Louis region. This is why I am so excited to be co-leading the St Louis SAA support group.
Those visiting the St Louis group can expect a warm, and inviting environment. I love meeting with fellow patients, getting to know them, and making myself available to support them in any way I can. The meetings will also be informative, productive, and supportive.
I can’t wait to meet everyone!
My name is Kristen Ray. I live and work in St Louis, MO with my fiancé and our 2 dogs, Bella and Gus. I have chosen not to have children, so I do a lot of volunteering with children’s groups to fill that void. Three to four years ago I left my career in the medical industry to find a position that was more comfortable for my health. From the twelve to fourteen-hour surgeries, then reporting to clinic for an eight-hour shift of scheduled patients got to be too much, as standing for long periods became more of an issue. After four more years of college, this time for business, I was able to land a position in the insurance industry where I am thriving. This position has also given me the ability to be in and out of the office for multiple doctors’ appointments, or work from home if I am unable to make it out of bed. I am extremely aware of how lucky I am to have found something that not only am I good at, but I thoroughly enjoy and works well with my newfound disabilities.
I have had quite a history with AS, starting with costochondritis and pleurisy at age 5-6. I have had several surgeries including disc replacements in the neck, and an ulnar nerve displacement surgery. I have several more surgeries in my near future, mostly attributed to the lack of control of my AS. I was doing great on Humira and NSAIDS for years, but after a break necessary for the ulnar nerve surgery in 2016, I have been unable to get the same sort of relief. I currently use (laughter! – the best medicine) physical therapy, chiropractic as emergency, pain management, Botox for migraines, rheumatology, neurosurgery, and most recently dermatology as I have now been diagnosed with Squamous Cell Carcinoma most likely from years of Methotrexate use.
I consider myself to be an old pro at this AS thing after so many difficult years just trying to get this under control. I am extremely excited to learn more about the other types of spondylitis, and even more excited to be doing it in a positive and supportive environment. Jed and I both carry a lot of passion for making this support group everything that it can be and look forward to having our members help us in that regard. I plan on learning just as much from the members, as I do from the materials that we cover at each meeting.
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