The Long Island Support Group

I was diagnosed with ankylosing spondylitis in 2012 at the age of 41 after experiencing symptoms for more than 20 years. I had been to various doctors throughout my adulthood who treated my symptoms, but could never pinpoint the underlying causes of my illnesses. I was prescribed medicine for countless diagnoses which failed to improve my condition. When my body didn’t heal from a car accident at age 24, my doctors, chiropractors, physical therapists, and family believed that my pain was psychosomatic. By the time I was in my 30s, I presented with flu-like symptoms 24/7, along with the original pain from the car accident.  My rheumatologist took x-rays and bloodwork which confirmed the presence of HLA-B27.

I’m an active person with AS who loves to walk, hike, swim, ski, and kayak with my husband and children. I continue to strengthen my body and mind through various forms of treatments, and my faith uplifts me and carries me through the challenging times.

I would like to facilitate discussions and offer support to my fellow Long Islanders who may not have access to other support groups. The commitment to the support group begins with my own thirst for knowledge. I attend as many virtual conferences as possible and read-up on the latest research about spondylitis. Whether by zoom or in-person, people who have spondylitis benefit from connecting with others walking through similar journeys. Listening, sharing, and learning about spondylitis can bring peace of mind and empathy among members. In a world that still struggles to understand spondylitis, we can lift each other up and be the positive light for one another.