Meetings offer education, encouragement, emotional support, and allow for open discussion about managing and living with spondyloarthritis.
Sunday, January 19th, 2025
3:00 PM – 4:30 PM Eastern Time
Virtual meeting, using Zoom.
Meeting Link Coming Soon.
This Facebook group is a forum to support one another and to share anything that pertains to all forms of Spondylitis/Spondyloarthritis. We are here to provide support to one another as we walk through our challenging journeys. I only ask that we all be KIND and respectful of our differences in treatment options.
After years of hip pain and skin rashes since birth, and the determination to find out why I had pain in my hips all the time, felt so fatigued, and did not feel “normal” especially to be in my twenties, I was finally misdiagnosed with a form of spondylitis in 1997. Fortunately this misdiagnosis, put me on the path to getting treatments that would still help with the intensity of my psoriatic arthritis and ankylosing spondylitis. I was finally correctly diagnosed with ankylosing spondylitis in 2007 and psoriatic arthritis in 2019.
This journey has been an on again/off again challenge to say the least. But the gift of having spondylitis is how it has humbled me and made me appreciate the smallest things in life. Though living with spondylitis is a journey that I would not wish on anyone. During the worst of my flares I have had to learn to focus on surviving the current moment with the hope that the pain would subside by the next moment. I suffered many years of pain while I was a single parent.But thankfully I still managed to raise my only child by myself since she was only two years old. However, I often had to rely on her to assist with my care during the times that I could barely walk, when she was too young to even care for herself.
At this time, I manage my AS with a biologic, a few other prescriptions, vitamins, a diet that includes a lot of vegetables (I am not vegan) and doing my best to keep a positive attitude as much as I possibly can.
I wanted to start this support group for a few reasons. First of all, I have a strong family history of spondylitis. Plus there are a number of us here in the Triangle area that have spondylitis. My hope is that we can all come together and share our experiences; comfort and support one another; and grow together in our knowledge about our treatments and lifestyle choices. Secondly, I do not think that anyone should suffer in this spondylitis journey alone. All new patients deserve a place to go and to have a strong support system. My goal is that the RDU Area Spondylitis Support Group will be an integral and comforting part of that support system.
Minionette is from Goldsboro, NC, but has spent most of her life in Raleigh, NC. She currently resides in Durham, NC. She loves animals and spending time with her cat. Spondylitis has forced her to keep her social life relatively simple. She is on a journey to pour her heart into advocating for spondylitis. She works full time as an Administrative Assistant for a local university.
I was officially diagnosed with AS in late 2015 after a challenging and stressful year which included a major job change. I had worked for 13 years as a case manager supporting patients with autoimmune diseases, to help them with health insurance and financial assistance for their expensive biologic medications.
So when I was diagnosed with AS, I was completely shocked. After many years of helping other people to understand their autoimmune diseases, I was about to start on my own autoimmune disease journey.
During the next several years, my rheumatologists kept leaving the practice, so I lacked consistent medical guidance and I didn’t know anyone else with this condition, so I was starting to feel lost.
The only constant support that I had then was the nurse ambassador from the drug company which manufactures the drug I take to treat my AS. She was AMAZING and I appreciate her more than she knows. I could not have gotten through my early days with AS without her support since I had minimal support from a healthcare provider.
In time I landed on a good rheumatologist and was receiving the medical guidance that I needed, but I still really wished I could connect with other people like me who had AS. I wanted to be able to network with others to discuss our experiences and share tips for coping with the struggles and ups and downs of life with AS.
As a case manager, I frequently encouraged my patients to seek out support programs with the national organizations that support their medical conditions. In September 2019, I took my own advice and sought out the SAA and found my way to the local support group which was launched that year by Mini Wilson.
I officially came on board as her co-leader in December 2019. I know that together, we will continue to nurture and encourage our AS “family” as it grows and our group will support one another during our AS journeys together.
This quote sums up our group’s perspective quite nicely: “There is no exercise better for the heart than reaching down and lifting people up.”
We’d love to have you join our team of passionate volunteers leading our spondylitis educational support groups! Learn more about how to get started here, and reach out to programs@spondylitis.org
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