November 2022 EDS News & Updates

Published: Wed, 11/02/22

The Chronic Pain Partners Post

A news source by and for the EDS community.

News

We have new social media accounts!

Chronic Pain Partners has a new Facebook and Instagram Page with lots of exciting content for our community. We also have a new Vimeo Channel for our professionally produced films that we will talk a lot more about in the upcoming newsletters! Please check out our channels, give us a follow and share them with your friends and family, so that we can continue to educate more people on EDS!

Follow us:

A woman with short brown hair and a purple face mask sits on a beige chair behind a black camera with an attached shotgun microphone.

Chronic Pain Partners produces new awareness films!

We are expanding our scope to produce original film content made by and for the greater community. With Chronic Pain Partners Production, we are supporting emerging journalists and filmmakers who take on the important task of representing the chronic illness and disability communities across the globe. Our first film published on our channel, We Are Visible, is a feature-length film about individuals with the Ehlers-Danlos syndromes, but we want to go beyond this community. Future films on this site will feature people all around the globe who live with varying illnesses - physical or mental health conditions - and disabilities - visible and invisible. Those documentaries will embrace "Nothing about us without us" and will all be produced by disabled filmmakers to ensure an accurate depiction of disability on screen!

We will release several interviews and films over the next months. If you don't want to miss our new films,

follow our Vimeo Channel:

HERE.

An illustration of a person with a white shirt and black shorts squatting. The person’s head is in some sort
of a stream consisting of a flickering TV white noise.

Long COVID Has Forced a Reckoning for One of Medicine's Most Neglected Diseases

The Atlantic

"ME/CFS is certainly challenging, not least because it's just 'one face of a many-sided problem,' Jaime Seltzer, the director of scientific and medical outreach at the advocacy group MEAction, told me. The condition's root causes can also lead to several distinct but interlocking illnesses, including mast cell activation syndrome, Ehlers-Danlos syndrome, fibromyalgia, dysautonomia (usually manifesting as POTS), and several autoimmune and gastrointestinal disorders."

Read

A comic-illustration of a person dressed in an orange spider outfit, wearing a grey hat, flying
through the air. The person shoots spiderweb out of crutches.

Marvel's New Spider-Verse Hero Shows the Struggle of a Real Disease

Screen Rant

“In Edge of Spider-Verse #4, the Sun-Spider fights for the people of New York while also fighting for greater accessibility standards for all.”

The new spider person lives with Ehlers-Danlos syndrome and uses a wheelchair.

Read

People protesting on a street. A person holds up a sign saying: Abortion is healthcare.

A Rare Disease That Underscores the Importance of Abortion Access

Undark

“'Diseases like Ehlers-Danlos Syndrome can make pregnancy dangerous - and abortion access crucial - health advocates say.”

Read

Our ORIGINAL Content

Sarah, a woman with long, dark blonde hair bound to a ponytail sits in a wheelchair in a large doctors office. She wears a black shirt saying “straight outta
collagen” and has one of her legs lifted up. Text: I had one doctor say, “Sarah, you’re crazy. Maybe you should just go off your meds because you don’t have anything wrong with you.” Sarah Rightmire in We Are Visible (Too), Episode 1.

We Are Visible (Too), Episode 1: Sarah Rightmire

We Are Visible (Too) is an ongoing mini-film series portraying people with EDS all across the globe. In this mini-documentary series, we will continue on the We Are Visible - a feature film about people with EDS - journey and add a variety of 5 - 10 minute videos of other people across the country that live with Ehlers-Danlos syndrome to our Chronic Pain Partners Production's Vimeo channel. All films are produced by journalist and We Are Visible filmmaker Karina Sturm and sponsored by Chronic Pain Partners.

In Episode 1, Sarah Rightmire shares her EDS story. Sarah is a young woman with Ehlers-Danlos syndrome, mast cell activation, POTS and many other comorbid conditions who struggles with the stereotypes others have of invisibly disabled young women.

You can watch Episode 1

HERE.

An illustration of a person on a steep hill pushing up a huge stone. Text: Holding It All Together When You Are Hypermobile, Christie Cox.

Book Review: Holding It All Together When You're Hypermobile

“Cox's biggest strength is that she can break down overwhelming situations into several smaller actionable items that give back control to the patient or, in one word: Holding It All Together When You're Hypermobile is empowerment.”

Read

Brianne, a white woman in her mid-30s wearing black framed glasses and dark brown hair in a messy bun, sits perched on a high stool in a snowy yard holding a
cane between her thighs while smiling at the camera with evergreen trees in the background. She’s wearing a light blue bathrobe and a pink scarf, and holds one bare hand up to wave at the camera

Chronic Illness Advocate Brianne Benness about her EDS journey and #NEISVoid

“One of the biggest things that I want people to understand is that most disease-focused organizations are looking at the diagnosis and the time afterward. But the reality is that receiving a diagnosis can take so long for complex and chronic illnesses. [...] People need to understand that the diagnosis is not when an illness starts; it starts with symptom onset. And people need support from symptom onset.”

Read

EDS Blogs & more

Three black letters on yellow background.

John Ferman of EDS Awareness: EDS is Not All in the Head

Hypermobility Happy Hour

"On this episode, John Ferman returns to talk about his recent work with his organization EDS Awareness/Chronic Pain Partners."

Listen

No End in Sight Podcast

Brianne Benness

Our wonderful interviewee Brianne Benness (see above) also hosts a chronic illness podcast called "No End in Sight."

Listen

Managing Mast Cell Pain with Linda Bluestein, MD

Bendy Bodies Podcast

"Mast cell disorders are prevalent in the hypermobile population, but can often go undiagnosed. Persistent pain can be initiated and perpetuated by mast cells, which have also been referred to as 'gatekeepers of pain'. How can someone who suspects mast cell issues go about seeking relief for mast cell-related pain?"

Listen

Spotlight: Chronic Illness & Disability

I was an athlete - now I am 30 and in a wheelchair thanks to long Covid

The Guardian

"I know a runner, a fighter, a coach are still in me, but I don't feel like her any more."

Read

Resources

A studio with a microphone a laptop and a sound mixer.

EDS Empower Hour: Special Disability Discussion with Doctors & Lawyers

Free Webinar recording of the EDS Empower Hour with Christie Cox.

Gain tips on what to prepare before you quit work, what to gather before you file, when and what a disability attorney can do for you, and how to maximize your doctor appointments to support an SSA or LTD disability claim if you have EDS.

Watch the Webinar recording

HERE.

Thanks for reading The

Chronic Pain Partners Post!

We hope you enjoyed it.

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