Spondylitis Study Opportunity

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"

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Migrating Salmon & heartbeat songs | a Poem For Pain Month

There is a roaring river beneath my skin, glacial ice flowing, collapsing everything in its path

Fish push through veins too small for them, swimming upstream

I feel my heartbeat everywhere

A trembling thud repeated and passed along, firing along corridors of joint and tissue

Durn dunh

Durn dunh

Durn dunh

In my fingers, one by one, a beat – keyboard style, like waves of smooth hypocritical staccato beats traveling from knuckle to knuckle. January March May July … the months with 31 days beat the most blood.

Continue reading Migrating Salmon & heartbeat songs | a Poem For Pain Month

What Parent Guilt Shows Us About Privilege Guilt | Guest Post

Hi! This essay is a guest post written by my friend, Patricia. It explores her perspective as a white chronically ill parent of a white chronically ill child, and draws parallels between her experiences of ‘parent guilt’ and ‘privilege guilt.’

The stories and health details about Joe and John are shared with consent.

Content note: this post includes discussions of medical experiences & symptoms including surgery & skin wounds

Here’s Patricia!:


Hi. I am thrilled to be here talking with you, my fellow Fans of Charis. Let’s dive right in.

If you and your child have chronic illness and/or are disabled, it is very likely that you’ve experienced some guilt about it. There’s plenty to choose from: the guilt that comes with parenthood and the guilt that comes with passing your illness on to your child. Today I want to expand on that even further. In this historical moment of possible structural shift, at this possible tipping point away from the world that encouraged the murder of George Floyd and so many others and toward something new, I want to look from our parent guilt to our national guilt. (To allow us each to think about our various privileges, I’ll call it “privilege guilt.”) Today I would like to ask whether how we respond to our parent guilt can teach us something about how to move forward as a guilt-stricken nation.

First, let’s consider the chronically ill disabled child. Let’s start with Joe.

***

If you already know the comorbidity story by heart, feel free to skip this section.

I gave several terrible gifts to to my son, Joseph. Some are hereditary things that I also suffer from, and others I can say I gave him by virtue of the fact that it was my body he was formed in. First, I passed to him a laxity of the connective tissues called hypermobility syndrome, a mild form of Ehlers-Danlos (EDS). As his bones grew, it slowly became apparent that he also had something termed “miserable misalignment syndrome,” aka “torsional abnormality.” Basically, this meant his shin bones were rotated about 30 degrees off center. Together with the EDS, this caused countless dislocations of his knees and an inability to walk or stand for more than a few minutes. In junior high, after years of PT, he underwent a series of astonishing corrective surgeries that have allowed him to walk with less pain and far fewer dislocations, although he still has trouble standing and walking more than a couple of blocks.

A picture from behind of a white-appearing healthcare provider with white lab coat with her hand slightly on the back of a young white teenager's back. He wears a blue hospital gown and takes a walk using a walker down a hospital hallway
Joe walking after a surgery. Author’s photo.

Continue reading What Parent Guilt Shows Us About Privilege Guilt | Guest Post

White Rights Are Wrong

CN: racism, violence, police, white supremacy, murder


A 400+ year campaign slogan “We’re white and right!”?

Is wrong,

Whites and rights don’t get along.

They’d rather be white than right
White flight takes a wrong turn
When supremacists end up taking
Turns
Spinning shots
Shooting shot guns

Knees on necks

(“Don’t tread on me”)

Waving flags that took rights

Waving flags that took lives

Protecting monuments of fear

Monumental injustice Continue reading White Rights Are Wrong

a voice for many

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