The Chronic Pain Partners Post
A news source by and for the EDS community.
|
New CPP educational
Videos!
|
EDSed, Episode 3: PT Elan Schneider on Neuroplasticity & Chronic Pain Management
|
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 videoHERE. 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.
|
New CPP ArticlesSurgery Prep & Emergency Planning
We have listened to our community which asked us to share content that will help them to prepare for a medical
emergency as well as a possible hospital stay with EDS and comorbid conditions. Our wonderful Chronic Pain Partners media team wrote these two articles for you! |
|
Basic Emergency Care Planning for EDS Patients
|
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.
|
|
|
|
Surgery Prep: Meeting Your EDS Hospital Stay Needs
|
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.
|
|
|
Our Chronic Pain Partners media team has worked on an article series on a topic that matters to many parents of children with EDS:
Accommodations at school. Part 1 of the series and a guest post by one of our readers can be found below. Parts 2 and 3 will be shared with the next newsletters! |
|
Unaccommodating Accommodations
|
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.
|
|
|
|
4 Tips on How to Navigate School as a Student with Ehlers-Danlos Syndrome
|
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.
|
|
|
|
Book Review: The Bendy Twisty Zebra by Kimby Maxson
|
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 hid my disabilities at work. Now I know they don't limit my worth.
|
Washington Post "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."
|
|
|
|
3 Women with EDS who are shaping the future
|
Reader's digest "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."
|
|
|
Spotlight: Chronic Illness & Disability
|
|
|
Unfixed Media "We will all face mental health challenges in our lifetimes, to varying degrees, directly and indirectly, but with certainty. The Unfixed Mind chronicles the real-life stories of individuals living with mental health conditions, capturing the humanity and complexity of navigating such diagnoses in today's world."
|
|
|
Christoph Glötzner, the Young German Paralympian Racing Towards Gold!
|
ABILITY Magazine "It's warm and sunny on this day in Beijing, where the 2022 winter Paralympics were hosted. Glötzner started for the German Para Ski alpin team. 'I was one of the younger participants. In fact, I was the youngest in my starting class, which was really cool,' Glötzner says and follows up by asking how his new beard suits. He has grown up quite a bit since our last interview in 2018."
|
|
|
|
New Collaborative Newsletter
|
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:
|
|
|
|
Mutation in MIA3 gene a likely cause of hEDS, study suggests
|
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:
|
|
|
|
Being Your Own Advocate in a Medical Setting
|
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:
|
|
|
Thanks for reading The
Chronic Pain Partners Post!
|
|