Category Archives: ankylosing spondylitis

ankylosing spondylitis, spondyloarthritis

Spondylitis Study Opportunity

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Hello readers! Oh, how I’ve missed posting regularly and hearing from all of you. COVID has really messed with my energy and schedule.

Occasionally an organization will reach out to ask me to help promote their study or survey. Recently I partnered with Viome Research Institute (VRI) to spread word about a study they’ll be starting soon. To be clear, this is a paid blog post, but it’s all my own words and thoughts except for the copied/pasted summary below from VRI’s website. I wholeheartedly agreed to promote this because I believe all research is crucial to finding better treatments and maybe a cure one day.

a graphic of an outline of a person on a white background. Inside the outline of the person is white background and various virus pathogens and parts of bacterias and living molecules filling the space

In this study, VRI will research the microbiome in folks with Ankylosing Spondylitis (AS), AKA Axial Spondyloarthritis (axSpA), to hopefully better understand its connection to disease activity. Those who participate in this study can receive up to $300 in Visa gift cards!

Here’s more info from VRI:

“Viome is conducting a research study to understand the role of the microbiome in AxSpA disease activity. AxSpA refers to a group of conditions that includes Ankylosing Spondylitis (AS) and non-radiographic AS. The goal of this study is to better understand the molecular features of the microbiome that may contribute to AxSpA flares and to determine if there are specific microbes found in the microbiome that may contribute to AxSpA disease activity.”

Black background. Graphic of a skeleton with see-through skin showing redness at the lower spine area. "Join Axial Spondyloarthritis Clinical Study." "Viome"

Learn more about V-150 Study: Role of the gut microbiome in Ankylosing Spondylitis (AS / AxSpA) study on VRI’s site OR you can skip right to the form they’d like you to complete if you’re interested.

Finally:

  • Currently VRI is only recruiting folks in the USA for this study
  • Act fast! This study begins soon.
  • If you have questions, email studies@viome.com

Leave a comment for me below if you sign up! I’d love to hear about it.

Bluish background showing various virus particles. "Viome Research Institute." "Join Ankylosing Spondylitis (AS) Clinical Research, help us better understand the root causes of AS flares." "Want to learn more? https://www.viome.com/vri/studies" "@ViomeResearch"
ankylosing spondylitis, Fatigue, spondyloarthritis

What Debilitating Fatigue Feels Like While It’s Happening

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I live with Ankylosing Spondylitis (AS), or Axial Spondyloarthritis (AxSpA) – the two names represent the same disease. AS is a systemic disease, which means it can impact multiple joints as well as organs. Fatigue isn’t an organ or a joint, but it is a big part of living with AS; a part that doesn’t get a lot of attention.

AS is characterized by inflammation throughout the body, which causes pain. Our bodies are busy fighting this inflammation and pain all the time; when we’re at rest as well as when we’re active, which is exhausting to say the least. Fatigue is a result of our bodies working overtime to fight constant inflammation; our body’s response to its own attempts to save us from ourselves.

Note: that paragraph above is my hypothesis as someone with the disease – it’s not something I have researched or proven.

I managed to write the following during one of the worst fatigue flares of my life. I focused all my attention on channeling the fuzzy thoughts in my head through my fingers to the keyboard on my phone instead of allowing myself the rest my body was begging for. I felt it was important to get the experience down in the moment so I could look back later and understand what I was really feeling. I wanted to document the truth so I would believe what I truly go through, because it’s so easy to question and dissociate from such things after the fact.

Continue reading What Debilitating Fatigue Feels Like While It’s Happening →

ankylosing spondylitis, spondyloarthritis

The Social Progression of Ankylosing Spondylitis

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When I was diagnosed with Ankylosing Spondylitis (AS), my world was upended.

I lived in a state of shock for the first month or so, clinging to hope that the diagnosis wasn’t really what I had.

I talked myself out of it. Or at least I tried: 

“I can’t have this incurable disease, can I? Maybe I imagined my symptoms, my pain, my fatigue – all those years of unanswered medical woes.”

I thought these things while also dreading the reality that I knew was true. This disease was with me for life. Period.

And then I learned I wasn’t alone. Everything I was experiencing – emotional, social, physical, medical – was being experienced by millions of strangers I would never meet.

I only realized, years later, the social progression of Ankylosing Spondylitis is something we all experience in our own way. We with the disease have conversations with ourselves, with our friends and family, with our disease community, our doctors, our medications, our side effects. 

The social progression with this disease is real and normal and natural, yet lonely all the same. It happens in different ways for all of us, and it continues for the rest of our lives as we adapt and change and grow and … well, survive our own bodies doing their best to survive.

Continue reading The Social Progression of Ankylosing Spondylitis →

ankylosing spondylitis, Dan Reynolds

Dan Reynolds Hasn’t Beat AS

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I have noticed when Imagine Dragons’ Dan Reynolds is in pain on stage. I see it surface briefly in the form of a grimace with pained eyes, a determined glare into space, or a barely detectable stretch after standing at the microphone for too long. I’ve said to friends, “He’s in pain right now.” Then I blink, and the moment is gone.

I know what Dan’s pain feels like. I know because I have the same disease he has, the one with a name that sounds like a dinosaur: ankylosing spondylitis.

I, too, have learned to mask my pain in public.

Ankylosing spondylitis (AS) is a systemic immune-mediated inflammatory disease that causes pain & stiffness primarily in the spine and low back, but it can also impact other joints. AS can damage the eyes, heart, and lungs; as well as cause fatigue and cognitive impairment. The disease is difficult to diagnose, often missed or misdiagnosed by doctors for years, and it impacts everyone differently. There is currently no cure.

For most observers, Dan looks the perfect picture of health; he posts regularly about his fitness journey, and mainstream media encourages that perception. One might think he has conquered AS and that perhaps everyone with else AS would feel great if they just copied his approach.

I had the chance to interview Dan about living with AS in 2017 for This AS Life and again in 2019 to learn about his new project, the Monster Pain in the AS campaign. I discovered in both interviews that his journey with AS is more multifaceted than mainstream media suggests. Continue reading Dan Reynolds Hasn’t Beat AS →