Thursday, May 28, 2015

{So what is Ankylosing Spondylitis (AS) anyway?}

Almost anytime I mention having arthritis, I hear "Really? You're way too young to have arthritis...". This is because of the confusion with osteoarthritis/degenerative arthritis. Initially, I was very defensive and wanted to yell at them to make them understand. But... Flies to honey... I've realized it's easier to explain it than to get in a huff about it. 

Let's start with the easy stuff... Osteoarthritis is considered to be the most common form of arthritis. It occurs when the protective cartilage on the ends of your bones wears down over time (you know, as you get old) (per Mayo Clinic).

Then, there's what I have going on - Ankylosing Spondylitis. Ankylosing Spondylitis (AS) is an inflammatory arthritis. The tricky part is that AS is also an autoimmune disease. Auto immune diseases cause our bodies to "attack" themselves. In AS, the joints in the spine are the target of the autoimmune attack, resulting in significant stiffness and pain in the back. As the disease progresses, it can cause new bone to formation and fusion of the spine, eventually creating a forward stooped position.  

Ankylosing Spondylitis is a chronic disease, meaning that it cannot be cured. While AS manifests itself differently for every person, most people will have times where the disease is particularly active (often called "flares"). There are also some folks that are lucky enough to have long period of time where the disease is "inactive" or they have very few symptoms. Every person that suffers with an autoimmune condition seeks the day they are in remission. It's the best way to avoid further destruction of their body.

I was diagnosed with undifferentiated spondyloarthropathy after college. This diagnosis came after first experiencing significant pain issues that began when I was 11/12 years old. The years after that initial diagnosis were filled with my acting as though nothing were wrong and not doing anything about my health. In 2009, I was diagnosed with AS, by Dr. Hadler at UNC-Chapel Hill. At that time, I was motivated to do something, but still not ready to try medication interventions. I tried every diet program, nutritional supplement, exercise, therapy – you name it, I did it. I’d get some temporary relief from the pain. Nothing lasted.

By the time late 2013 rolled around, I was desperate. I began experiencing a flare on Saturday, December 14 - it was a flare like no other. For a week or so, I was in constant pain and it was becoming apparent to those around me. Jason knew there was something really wrong when I willingly contacted our primary care doctor. I nearly begged for a referral to a rheumatologist because I knew it was time to put my health ahead of my not wanting to take medication. I met the rheumatologist just after Christmas. After x-rays and an MRI, we went with the "big guns" for treatment and I started Enbrel the next week. 

Since that time, I have had ups-n-downs, changed doctors, switched biologics, and made other significant changes in my life to benefit my health. While I may have some mild fusion, I am doing everything in my power to prevent more. I am fueling my body with the best nutrition possible; I am training at CrossFit (modifying as necessary given how I feel each day), and keeping an open mind. I've also had the opportunity to advocate on behalf of myself and others that need the assistance of biologics (and, hopefully soon, biosimilars).  

I am stronger than Ankylosing Spondylitis. The journey may not be perfect, but I am going to win. 

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