Jed Finley was diagnosed with Ankylosing Spondylitis at the age of 12 during a time when children of that age were not prescribed medications and the amazing treatments we have today hadn’t been invented yet. Because of this, he mostly forgot about his diagnosis and remained active until his early 20s when the disease became too much and he needed to stop the sports and activities he loved.
At the age of 25, Jed became involved in assisting people with disabilities while managing a coffee shoppe in Vietnam. All of his workers were living in poverty and lacked the funds for any type of medical treatment. Several were disabled due to accidents or were born with a physical ailment that caused them to be cast aside as they were not “worthy of education” or employment. The coffee shoppe offered them a chance at finding self-worth and pride in who they are and the money they needed to break the cycle of poverty.
Jed returned to Missouri with this thought in mind, and in 2007 he founded the Facebook-based support group “Living With Ankylosing Spondylitis” as a way to connect with, learn from, and provide support to his fellow “Spondys”. By 2019 the group surpassed 20,000 members and grows by a few hundred every week.
In May of 2019, he was featured in CreakyJoints’ Arthritis Month inspired Ankylosing Spondylitis awareness campaign. He shared his story of being diagnosed, how he went so long without treatment, and tells the viewers not to leave a doctor’s office unsatisfied.
Jed has also been interviewed by several online publications, and the New York Times talking about disability in the workplace. He writes for this blog “Jedi Mastering His Chronic Life”, And has shared his viewpoints of life with Ankylosing Spondylitis in the video series “Inside Incurable Lives” and the parent feature-length documentary “Becoming Incurable”.
Jed is also active in the AS and chronic illness communities on Social media via Twitter at the handle @JediMaster941.
When he isn’t advocating for AS, Jed is a Special Education teacher at the elementary level working with kids with Autism. He is one of the support group leaders of the St. Louis chapter of the Spondylitis Association of America. Jed has a beautiful family in a wonderful house he helped renovate with his amazing wife and four fur babies.
He is always willing to chat with anyone with AS whether newly diagnosed or has been living with it for many years.
Click here to read all of Jed’s articles on AnkylosingSpondylitis.net.