October 2022 EDS News & Updates

Published: Mon, 09/26/22

The Chronic Pain Partners Post

A news source by and for the EDS community.

News

Two people in a physical therapy office. A man with short brown hair and a blue shirt stands next to a woman with short brown hair and a white shirt. They
both smile. Text: Behind the scenes at Healy Physical Therapy and Sports Medicine.

WHERE PHYSICAL THERAPY ENDS AND MAGIC BEGINS

“He helped my daughter get from being bedridden to going back to college,” says Michele Pestana when I meet her at Healy Physical Therapy and Sports Medicine in Providence, Rhode Island, on a hot summer day in July 2022. Pestana is 47 years old and has EDS, like most of Dr. Michael (Mike) Healy‘s patients. She is one of Healy‘s regulars and has come to his practice for more than eight years. “After I was diagnosed, I saw Mike [Healy] talk at an EDS conference and just felt like he had the right ideas on how to treat people with EDS,” Pestana states. When she started working with Healy, most of her joints were subluxated and previous physical therapy has made her symptoms much worse. “Nobody told me that the exercises I did and how I executed those were wrong for someone with EDS. I had to relearn everything – from posture to walking and breathing.” Over the years, Healy additionally helped her recover from multiple surgeries – Tethered Cord, CSF Leaks, hysterectomy and oral surgery. “I couldn‘t even walk half a mile back then, but now I can walk three!“ [...]

Read the full article

HERE

Daily Mail publishes misinformed, harmful article about chronically ill people

Daily Mail

You may already have seen the daily mail article called: "'Spoonies' - post TikToks of themselves crying or in hospital to generate thousands of likes - as experts raise concerns over internet-induced wave of mass anxiety"

which caused a huge outcry within the chronic illness community. Unfortunately, many journalists don’t have any experience or knowledge in regards to how to report on chronic illness and disability or the harm they can cause if they do it anyway. This article is an example of inaccurate reporting. If you agree, there are some things you can do to help:

Sign the petition below, asking the newspaper to take down the article.
Send a letter to the newspaper or the author of the article explaining your perspective, educating them on chronic illness and disability.
Share your opinion on social media.

You can read the article

HERE.

Or sign the petition

HERE.

A man with short brown hair sits in an office chair talking. He wears a red shirt and has his hands
folded in front of his body.

'Bend or Break' Raises Awareness About Invisible Illness

Pain News Network

“Mitch has seen firsthand the positive effects Bend or Break is having. Medical doctors have thanked him for the film because it helped them understand patients with EDS or other invisible illnesses. He's also spoken to psychology students who have watched the film and is hopeful that when they start working as mental health professionals, they'll be cautious about insisting that a patient's chronic pain is psychosomatic.”

Read

How one disabled hiker is clearing a path for others: 'I didn't see people who look like me.'

USA Today

“'I just felt like hiking wasn't something I could do because I didn't see people who look like me,' they said. Nagakyrie, who is nonbinary and uses the pronouns they and them, has Ehlers-Danlos syndrome, Postural orthostatic tachycardia syndrome and several other medical conditions that make hiking tricky.”

Read

ORIGINAL CHRONIC PAIN PARTNERS INTERVIEWS

A woman with a bald head and large orange earrings. She sits on a couch and wears red lipstick and a black shirt.

Author Christie Cox about her new EDS book 'Holding It All Together When You're Hypermobile'

For our Chronic Pain Partners newsletter, journalist Karina Sturm spoke with Christie Cox, fellow zebra and author of the new EDS book "Holding It All Together When You're Hypermobile." Cox shares her journey to getting diagnosed with EDS, what motivated her to write this book, and what the book is all about.

You can read the full interview

HERE.

A black and white photo of a woman with chin-long brown hair. She is waring a black shirt and black pants.

The Sextacular Zebra Group: An interview with admin Mary Cordaro

“Sex was part of how I taught myself to reintegrate my mind and body. I was angry that I wasn't enjoying sex, that I couldn't enjoy sex, and that sex had stopped. I didn't want sex, but I wanted to enjoy sex. I then decided I had to figure out how to enjoy my body and what I need from sex to be able to have a sex life.”

Read

A black woman with long black hair is sitting in a chair in a garden. In the background are green bushes and trees. She is wearing a blue shirt with flowers and black
glasses.

EDS Caregiving: An interview with Alice Agyemang, professional full-time caregiver

“You have to be very patient. That's the most important rule. You also have to be loving and caring because her case is exceptional, and there may be things a caretaker cannot fully understand or relate to because some needs are extraordinary.”

Read

EDS Blogs & more

Three black letters on yellow background.

Hannah Ensor (UK) on the HMSA, Stickman Communications, and More

Hypermobility Happy Hour

"On this episode, Kerry interviews Hannah Ensor regarding her work with the Hypermobility Syndromes Association (the HMSA) and Stickman Communications."

Listen

Save the Date

A book cover showing an illustration of a person pushing a stone up a hill. Text: Holding it all together when you are hypermobile, Christie Cox. More text:
The EDS Empower Hour, Free Webinar Series

Author Christie Cox asked us to share her new project, the EDS Empower Hour, with you!

Christie says, "Join in the webinar series of discussions surrounding hypermobile EDS, its common comorbidities, and challenges with special guest experts.

Presented as a community service for fellow patients by the book author of Holding It All Together When You're Hypermobile."

Learn more

HERE.

Spotlight: Chronic Illness & Disability

A man with long brown hair and brown eyes.

I gave up hope of a cure for my chronic condition. And it's made me happier than ever before

The Guardian

"For 30 years, I tried to 'fight' it. In the end, I found relief in embracing my identity as a person with a disability."

Read

Resources

a woman with curly black shoulder-long hair. She is wearing a stethoscope around her
neck and a white coat with her name embroidered: Brianna Cardenas.

Healed and Empowered: Brianna Cardenas, DMSc, PA-C, ATC, opens new office to support the EDS community!

We are very happy to share these great news with the community: Brianna Cardenas, DMSc, PA-C, ATC, recently opened a private office dedicated to people with the Ehlers-Danlos syndromes.

Brianna offers Telemedicine appointments for California Residents 18 and over. For people outside of California, she offers health consultations which include the following services:

Symptom discussion and clarification
Medical record organization
Imaging review
Nutrition consultation
Alternative medicine
Patient advocacy

Living with chronic illnesses led me to become a healthcare provider in order to learn to reduce pain and be well.

I'm eager to share the knowledge and tools that have helped me become healed and empowered!
- Brianna Cardenas

Find out more about Healed & Empowered

HERE.

Volunteers Needed!

A zebra with glasses on a laptop at a desk. Text: Want to become part of our team? We are looking for Volunteers: Journalists/Writers & Social Media
Experts

Who: Chronic Pain Partners is looking for: Journalists, Writers & Bloggers; students are welcome; people from the EDS/disability community are preferred.

Description: You will be closely working with the editor-in-chief to produce high-quality journalistic articles, reviews, opinion pieces, and more, all focusing on topics such as EDS, chronic illness and disability.

Skills needed: You should be able to communicate and write in English (proficient level) and have basic writing, interviewing and editing skills.

When: This position starts as soon as possible; you should be able to commit to at least six months with a minimum of eight hours per month.

We at Chronic Pain Partners work on a volunteer basis and provide free resources to the community. Want to be part of our team? Then send us an e-mail including a description of who you are or a resumé to chronicpainpartners@gmail.com.

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Chronic Pain Partners Post!

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