Tag Archives: Spondylitis Awareness Month

ankylosing spondylitis, Heroes

I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I)

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When Try Guys member Zach Kornfeld announced he has Ankylosing Spondylitis (AS) in September 2017 I was so relieved.

I know what you’re thinking. Relief sounds super self-centered, so let me say right now that I was also really sad for Zach’s diagnosis; I wouldn’t wish Ankylosing Spondylitis on my worst enemy. But when you live with a common-but-unknown disease, awareness is what you live for.

Well, it’s what I live for anyway. And when a celebrity makes an announcement a lot of people pay attention.

Zach’s video marked the second “Ankylosing Spondylitis coming out” by a celebrity figure in two years (Dan Reynolds announced his in 2015) and it made a big splash in the AS community. Spondylitis Twitter was buzzing. Spondylitis Facebook and Instagram were buzzing, etc etc. It was exciting to see someone talking frankly about AS to a really large audience (as of April 27, 2018 the video had nearly 4.9 million views). Zach was telling all our stories by telling his own and we clung to this moment as a chance to be seen and heard.

Here, let me lay this out for you better.

Ankylosing Spondylitis is an immune-mediated inflammatory disease that can progressively damage joints in the body, especially in the spine, and in some cases cause the spine to fuse into a column of rigid bone. Additionally, AS is a systemic, or whole-body, disease; so it can cause fatigue, cognitive impairment, sleep impairment, and damage multiple organs in the body. There is no cure, so the goal for treatment is to reduce inflammation to slow the progression of the disease and manage symptoms.

Many of us who have AS had never even heard of the disease before a doctor sat us down and opened their mouth to a flood of slow motion gibberish, “You have A n k y l o s a u r a s d i n o s a u r S p o o n d a c t y l a u r u s B l i b b i d y B l o p p i d y B o o.”

Then, as if our disease isn’t hard enough to pronounce, our own friends and family struggle to even understand what we’re experiencing and that it’s serious. And a lot of general practitioners have already forgotten the one paragraph about AS they read during medical school. There are even rheumatologists (the specialists who treat AS) who refuse to diagnose women. More about that another time.

And yet AS affects so many people. Ankylosing Spondylitis falls under an umbrella of diseases called Spondyloarthritis, which affects an estimated 2.7 million people in the USA alone. That’s more than Amyotrophic Lateral Sclerosis (ALS)/Lou Gherig’s Disease, Multiple Sclerosis, and Rheumatoid Arthritis combined. Estimates vary regarding the number of people specifically with AS in the US, but it is the most prevalent type of Spondyloarthritis. That’s a LOT of people.

I wish nobody had AS, but since a lot of us do and we largely suffer in silence, Zach’s video was cause for celebration – not for his being diagnosed, but for his willingness to talk about it in front of millions of people.

When I saw his video I knew I wanted to help his story reach more people. I knew I wanted to talk to him.

So six months later I reached out to him about a chronic disease documentary I’m in (shameless plug) and it turned into a Skype interview.

Continue reading I talked with Zach, the Try Guy with Ankylosing Spondylitis (part I) →

Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Heroes, Invisible disease, Patient Advocacy, Role Models, spondylitis, spondyloarthritis

Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds

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I don’t always interview rock stars – it’s not really my thing. But this day was different. This was personal.

It was a chilly morning, much too early for my stiff body to roll out of bed. But this was a big day – I would soon be interviewing Dan Reynolds, the lead singer of Imagine Dragons.

“This wouldn’t be happening,” I thought, “if we didn’t share a wicked diagnosis.”

In late 2015, Dan announced during a show that he lives with Ankylosing Spondylitis (AS). A year later, he partnered with Novartis Pharmaceuticals Corporation and the Spondylitis Association of America to launch This AS Life Live!, an interactive talk show for and by patients living with AS.

Before I keep going, I want to express how lonely it can be to trudge through life surviving a disease that people do not know about. I spend substantial time and energy educating friends, strangers, and even doctors about my condition, which leaves little room for receiving compassion and empathy – like the supportive gestures people usually offer to someone who has a disease in the limelight. Everyone knows cancer is bad, but AS is not a well-known disease, so for a celebrity to name it on stage is life-changing. Continue reading Talking Ankylosing Spondylitis with Imagine Dragons’ Dan Reynolds →

#sickbody, Advocacy, ankylosing spondylitis, Arthritis, chronic disease, chronic pain, Invisible disease, Patient Advocacy, spondyloarthritis

#Spondylitis Awareness Month

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Image by Rich Beckermeyer Makeup by Alex Cassie

On April 11th, 2013, I walked into my first appointment with a Rheumatologist and walked out with a diagnosis of Ankylosing Spondylitis and the beginning of a life of advocacy, both for myself and for so many suffering silently with this progressive, degenerative, extremely painful disease.

I was always a strong person, yet I am stronger now than I ever was before, but in ways I don’t want to be. I would much rather have the freedom to choose to be mediocre if it meant I could have my health.

We do not choose to be strong. We become strong when we choose to survive.

April is Spondylitis Awareness Month. Learn about Ankylosing Spondylitis by watching this video created by the Spondylitis Association of America.  Then share it.