The Chronic Pain Partners Post
A news source by and for the EDS community.
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We at Chronic Pain Partners wish you all the best for the New Year! To kick the new year off, our volunteer team worked relentlessly to bring you the latest news on EDS and beyond. So you'll never miss what's been going on in the community but also the broader disability and chronic illness field, as well as original interviews, research pieces, and articles with fellow zebras, leaders, experts, and more you can only read in this newsletter (and on our website). In January's newsletter, you'll find interviews with Miss Wheelchair Virginia 2021 Ryann Mason, Bend or Break's Mitch Martow, author Jessica MacLean, Lesotho's rare disease advocate Nthabeleng Ramoeli, and articles on EDS & Chronic Fatigue, as well as tips on how to properly do pacing. We also share with you the incredible
news piece by Sarah Lazarus for CNN, an article on wonderful female scientists
with EDS improving EDS research, another piece covering an EDS crisis in Canada, and a Washington Post article on gaslighting and gender bias in medicine. Additionally, we share new research on POTS. We hope you enjoy January's content! New EDS Awareness articlesYou asked us, and we listened! In our last survey, you told us you wanted to learn more about EDS & Chronic Fatigue and how to pace. Well, we listened! Volunteer Christie Cox wrote two articles and developed a weekly planner for the zebra!
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Surviving the Rollercoaster of EDS and Chronic Fatigue: Tips and Tricks for Managing the Boom-and-Bust Cycle
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Chronic Pain Partners Post When you're doing okay, it can feel like a high, a return to normalcy even. It is hard to figure out the level of functioning that is going to allow you to get things done without making your symptoms send you into another flare. It's a tiny little fine line between doing too much and too little. You know, the one, when good days come around, meaning
that your pain is low, you have energy and you are ready to function. [...] You try to do as much as you can during those "ups," but you inadvertently do too much, making your symptoms flare and leaving you worse than you've been for a while. This is the boom-and-bust cycle, and the rollercoaster begins.
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The Six Steps of Proper Pacing
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Chronic Pain Partners Post In addition to our Boom and Bust article, we wanted to provide you with some techniques to do pacing as a person with EDS. You can read the Six Steps of Proper Pacing HERE And don't miss our Weekly Planner for
the EDS Warrior, which you can download HERE
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New EDS Awareness interviews |
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The Road to Recovery Was Paved by Me and My Wheelchair: Q&A with Ryann Mason
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Chronic Pain Partners Post Many people with chronic illnesses, like Ehlers-Danlos syndrome or other disabling or deteriorating conditions, are often afraid of the possibility of "ending up in a wheelchair." It is a real fear. But what if we changed our thinking? Wheelchairs provide freedom; they aren't the end but empowering and enabling for the user. And sometimes, they lead to new
beginnings. That story is exemplified in Ryann Mason.
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Mitch Martow on his EDS journey and the documentary Bend or Break
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Chronic Pain Partners Post Mitch Martow, an EDS advocate from Toronto, Canada, is best known for being the focus of the 2021 released Canadian EDS documentary Bend or Break. In this interview, you'll get close to Martow and his humorous side while he shares how he copes with having not only EDS but also relapsing polychondritis, as well as suffering a stroke at age 27.
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Advocate Nthabeleng Ramoeli on her EDS journey, EDS care in Lesotho, and why she established an NGO to help all rare disease patients
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Chronic Pain Partners Post Rare disease advocate Nthabeleng Ramoeli was born in Lesotho, a country encircled by South Africa, and lives with Ehlers-Danlos syndromes and many other comorbid conditions. The young woman relentlessly fights for improved access to health care for rare disease patients in her home country and shares in this interview the long and stony road to her EDS diagnosis and
why she established an NGO to help all rare disease patients in her country.
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Author Jessica MacLean on how writing saved her and what she learned from her ancestors
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Chronic Pain Partners Post Despite never being able to hold a pencil correctly, MacLean was first published during high school, and she became a writer. The Arizona native's recently published book, Arizona Rain, tells the stories of her ancestors. In this interview, MacLean speaks about her EDS journey, how writing saved her life, and shares the juicy details she found out about her family
while writing her book.
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Millions have the same 'bendy body' disease as my daughter. Why isn't the medical profession paying more attention?
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CNN We wanted to share this wonderful piece on EDS by Sarah Lazarus with you. In this comprehensive article, which is probably the best writing on EDS in the mainstream media in a long time, Lazarus, whose daughter was diagnosed with EDS, interviews several EDS patients around the globe, as well as EDS experts. If you want to share an accurate representation of people with EDS, this is the right article.
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Revenge of the gaslit patients: Now, as scientists, they're tackling Ehlers-Danlos syndromes
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STAT "Type 'Ehlers-Danlos syndromes' into a search engine, and multiple suggestions pop up. Is Ehlers-Danlos an autoimmune disease? Is EDS hereditary? Rare? [...]" In this article, patient leader and scientists Cortney Gensemer and Sabeeha Malek speak about their groundbreaking work.
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A surgeon in prison, a broken health system: People with rare disorder struggle for care
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National Post "People with EDS have chosen euthanasia, including the B.C. woman of a controversial Simons ad, because they can't get care in Canada."
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Spotlight: Chronic Illness & Disability
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From heart disease to IUDs: How doctors dismiss women's pain
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Washington Post "One woman was told she was being 'dramatic' when she pleaded for a brain scan after suffering months of headaches and pounding in her ears. It turned out she had a brain tumor."
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Plasma proteomic profiling in postural orthostatic tachycardia syndrome (POTS) revelas new disease pathways
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"Our observations generated by the first use a label-free unbiased quantification reveal the proteomic footprint of POTS in terms of a hypercoagulable
state, enhanced cardiac contractility and hypertrophy, skeletal muscle expression, and adrenergic activity. These findings support the hypothesis that POTS may be an autoimmune, inflammatory and hyperadrenergic disorder." Find out more:
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Thanks for reading The
Chronic Pain Partners Post!
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