Do you remember the day you were diagnosed, the end of your “diagnostic journey”? Was it a lonely journey?
Lately, I find myself less comfortable with the term “journey” to describe disease milestones. Preferring to think of a journey as something I chose to do. An adventure with a clear launch and conclusion that defines a section of life’s timeline. AS feels more a part of my life then a section of my life. AS feels enmeshed, not separate, from my life’s journey.
If you are like me, you have identified some disease milestones -- some negative, some positive. Sitting in the rheumatologist’s office with my wife and hearing my diagnosis for the first time certainly stands out as a milestone. As does the first time we met others living with AS at a patient get-together. I remember several appointments with my health care professionals where I had to explain what AS was to them because they were not familiar with it. There are also memories of specific days with clear symptoms of AS long before my diagnosis that were dismissed or misdiagnosed. Even a misdiagnosis that “required” surgery. Making new medication decisions are vivid milestones to me. Indeed, there are many memories I recognize as milestones living with AS.
The first time I sat in on a session on ankylosing spondylitis at the American College of Rheumatology (ACR) conference was a milestone for me. I was dwarfed in a huge conference hall with doctors and researchers that are actively caring and doing something about AS. Up until that very moment, I imagined that very little was being done for my disease. Clearly, it seemed that health care providers didn’t know much about AS and it wasn’t important to enough people to learn more. My own rheumatologist admitted that I would soon learn more than she did regarding AS when I told her where I was working.
Meeting others living with AS and the physicians researching AS has had the power to change an isolating and lonely feeling to one of a community of shared experiences and goals.
2023 marks several milestones for AS. It was 50 years ago that an association was found between HLA-B27 and AS. I imagine the excitement 50 years ago. Back then, the image of AS was person fused in a hunched over position with a physically limited life. Doctors must have thought that a cure was just around the corner. The cure wasn’t and still doesn’t seem to be “just around the corner.”
Forty years ago, patients took matters into their own hands to find a cure and improve outcomes by forming the nonprofit now known as the Spondylitis Association of America. With the support of this patient group, the AS researchers formed SPondyloArthritis Research and Treatment Network (SPARTAN), which is now celebrating its 20th anniversary.
I’ve attended every SAA seminar, SPARTAN annual meeting, and ACR conference for the past 11 years. It still doesn’t feel like some sort of adventurous journey. I do feel a sense of community, refuge, and shared commitment at each one.
Despite the lack of appropriate funding for research, the progress has been outstanding in terms of understanding and treatment. The outcome for a young person being diagnosed today is much better than 50 years ago.
Now instead of assuming that nothing is being done about our disease, I know that a great deal is being done. We certainly still have much to do. I’m not sure which project or conference will be remembered as a milestone. I am confident that the research investments being made now will continue to help not just us, but the future generations.
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Photo Credit: BraunS / Getty Images
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