On this blog site I will not share the details of my ups and downs of daily life with the autoimmune disease, Ankylosing Spondylitis (“AS”). Whether you are the afflicted or the caregiver, be assured I am more than empathetic to the serious problems that stem from severe pain of major joints that no longer move freely; a spine so hunched and unbendable, a trip to the doctor is unbearable. There are, however, established sites where the daily encouragment and advice needed to keep moving forward despite AS are freely and generously given. I hope to see you there.
My hope for this blog is to make it a place of learning for those who need to know what this disease is, how to explain it, how to survive it. AS goes well beyond low back pain; it is far more than a form of arthritis. Tell a friend, relative or medical professional you have Multiple Sclerosis or ALS (aka Lou Gehrig’s Disease) and there is an instant bond of compassion and understanding for the challenges you and your family will have to face everyday for the rest of your life.
Tell a friend, relative or medical professional you have Ankylosing Spondylitis, and there is a high probability you will get a blank stare as they have never heard of it. How can AS be explained when too few know the skeleton is an ever-changing complex organ, not a bunch of hard sticks held together by muscles, tendons, and ligaments? How many know there is a specific language for AS? What is a ‘syndesmophyte’? What is ‘enthesitis’? How does one explain the pain? How can you explain how sick you are absent a fever and you appear just fine? How can we advocate for ourselves, for each other? How can we help those who hear us say “I have Ankylosing Spondylitis” connect instantly with compassion and understanding?
While I don’t want to share my daily struggles with AS, I do want to share the unnecessary pitfalls and hardships from my suspicion there was something wrong to an unequivical confirmation there was, in fact, something terribly wrong. Because the course of my life — and my family’s — should have been different with an early diagnosis when it could have been made, I am now passionate about dragging AS off the pages of complicated scientific research papers and out of the closet of the radiology department. To understand AS you need to picture it. I want to share that picture with the world.
So that is this blog’s journey: to put ankylosing spondylitis into the vernacular. It should be as recognizable as the word ‘cancer’ or ‘diabetes’. Collectively, we can advocate for our needs by identifying what we should be able to expect from our national and private healthcare insurers, medical professionals, and social services. Politically, there must be a renewed world-wide commitment to eradicate the exploitation of human beings in biologic research, especially those with genetic diseases.
In my next post, I want to publish a dictionary for AS I started to make sense of two decades of radiology verbiage that never got me to a diagnosis. Ever hear of Baastrups disease? How about Haglund’s deformity? Know the difference between spondylitis and spondylosis? The difference between an osteophyte and a syndesmophte? My primary care doctor didn’t. My pain specialist didn’t. Though I am not a doctor, and can not teach, I had to learn the language of AS and match it to images on the radiology to get to a diagnosis. I want to share what I have learned so others can advocate for themselves. Any scientific or medical information provided in this blog will cite the source.
Please leave your constructive comments. Share here what you want to see changed. Let’s work together to make it happen.
Know Ankylosing Spondylitis: ASk 