Chronic Pain Partners Post

Widespread chronic pain is one of the main symptoms for people with any type of Ehlers-Danlos syndrome and can be debilitating. At the same time, many common treatment options, particularly with pain medication, lead to side effects. But what if we could reduce our pain without any negative consequences? In this interview, we spoke with Dr. Elan Schneider, co-founder of the Retrain Pain Foundation and CEO of TrainPain, about neuroplasticity and how it can be used to develop new and innovative management options for chronic pain.  

Watch the video

HERE.

We are also providing you with a text-based interview of the conversation because of the relevance and depth of the conversation. You can read the interview with Elan Schneider

HERE.

Chronic Pain Partners Post

Creating an emergency plan document is essential for patients with Ehlers-Danlos syndrome and its many comorbidities, especially allergic or mast cell activation reactions. Take time to prepare in advance for an emergency before you get hit by a crisis by following these step-by-step instructions for your own safety and well-being.

Chronic Pain Partners Post

How to be prepared and stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS). This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy.

Chronic Pain Partners Post

In this guest post, Avi Zahavi writes about her daughter's struggles to receive proper accommodations for her Ehlers-Danlos syndrome and invisible disability throughout high school and nursing school. 

Chronic Pain Partners Post

Living with Ehlers-Danlos syndrome (EDS) as a high school student can be especially challenging. The normal struggle of balancing academics, extracurriculars, and social life, all while trying to figure out who you are as a person, is overwhelming for most teenagers but is made more complicated when having to manage a chronic illness.

Chronic Pain Partners Post

Move over, Dr. Seuss! Make room on children's bookshelves for The Beny Twisty Zebra, written by Kimby Maxson and illustrations by Ron Houchens. With colorful characters, catchy rhymes, and a heartfelt message, The Bendy Twisty Zebra brings to mind some of Dr. Seuss's famous books. 

"I gradually learned my worth wasn't determined by what I could 'do,' and that it was more important to listen to my body and myself."   

"Accepting chronic illness requires courage. But for three exceptional women, courage can be found in their refusal to accept the status quo. Be it through movement, charity, or science, each are driven by a relentless determination to improve the prospects of those who share their condition, Ehlers-Danlos syndrome."

EDS SHARE

"A new collaborative community newsletter for EDS is here! EDS S.H.A.R.E. is where patients, providers, and advocates come together in a joint effort to build a collection of the best resources on hypermobility, EDS, and its common comorbidities. It stands for what we do, we share: Sending Helpful Articles, Research, and Education. Because that's how we'll get through this, together. You can contribute to the growing knowledge base on how to get diagnosed, get treated, doctor webinars to watch, find helpful products and apps, and get ideas for how to survive life with EDS. If you have a suggested news article, a blog, a resource or a new medical research publication you want to pass along, share it here."

Find out more:

Ehlers-Danlos News

"A mutation in the MIA3 gene, found in a woman in Poland as part of a larger study, was deemed to be a likely cause of hEDS."

Find out more:

The Zebra Network

"Being your own advocate not only improves the quality of your care in the future, but also provides your local caregivers, physicians and hospital staff a better understanding of what your disorder or condition is and makes it a little easier for the next rare disorder patient coming through their door."

Find out more: