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.”