The Chronic Pain Partners Post
A news source by and for the EDS community.
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Chronic Pain Partners produces new educational videos: EDSed!
EDSed is our new series of full-length interviews with international EDS experts. This educational interview series is complementing our webinar recordings and is another free resource for our community. (Scroll down to see our first
interview with the Norris Lab!) Read more: HERE. |
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The Chronic Illness That Some Suspect Contributed To Elvis Presley's Death
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Grunge "It has also been suggested, however, that a major contributing factor to the death of the King was a chronic illness known as Ehlers-Danlos syndrome."
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CDC issues new opioid prescribing guidance, giving doctors more leeway to treat pain
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NPR “'The 100-page document and its topline recommendation serve as a roadmap for prescribers who are navigating the thorny issue of treating pain [...]”
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The 12 Gifts of Blissmas: This Holiday Season's Gift Guide for the EDS Warrior
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Chronic Pain Partners Post The Chronic Pain Partners Media Team has put together a gift list for the holidays with twelve of our favorite recommendations! Browse useful items for your loved one with EDS in categories such as Soft & Cozy, Heating & Cold Packs, Stability & Support, Massagers, Trigger Points, Funny Items, Hydration, Writing & Art, Pain Relief, Sleep, Gift Cards,
and more.
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EDS Holiday Hacks: Twelve Tips for Setting Yourself Up for Success by Realigning Your Expectations
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Chronic Pain Partners Post This time of year, it can be hard for anyone, especially those with chronic illness like Ehlers-Danlos syndrome (EDS), to gear up for the holiday madness. The pressure to shop, cook, wine, dine and be fine is too much! You might not be able to travel or gather with loved ones for various reasons, such as health, costs, or a lack of energy. That's why the Chronic Pain
Partners volunteer media team curated a list of our top ideas to keep you happy, healthy, and healing no matter where you are for the holidays.
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EDSed Episode 1: The
Norris Lab Chronic Pain Partners Production In our first EDSed Episode, we interviewed Dr. Gensemer and Dr. Norris, the driving forces behind the Norris Lab. Dr. Norris is a professor in the department of Regenerative Medicine and Cell Biology at MUSC. Dr. Gensemer achieved her PhD in the Norris Lab in 2022. Her current research is focused on the genetic and molecular mechanisms of hypermobile Ehlers-Danlos Syndrome. In this interview, they talk about what the Norris Lab currently
does and plans to do in the future, how they became this EDS powerhouse, why accessibility matters, and what challenges female scientists with EDS face. You can watch Episode 1
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Para Climber Anoushé Husain on "believing in the impossible", her cancer diagnosis, EDS journey, and the sports she loves
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Chronic Pain Partners Post “It's one of my main mantras: believing in your impossible. Because inevitably, I've ended up doing things that shouldn't be possible. If you looked at me on paper and gave it to a random person, they would say, 'Oh my God, how are they still functioning?' I'm doing things that, in terms of society, shouldn't be possible, right? I am accepting that I've been dealt a heck of a deck of cards. They sometimes aren't the best, but I can't change
the cards I've been given. What I can change is what I do with them. ”
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Christopher & Dana Reeve Foundation "I was born with Ehlers-Danlos Syndrome, a genetic connective tissue disorder that causes all of the collagen in my body to be too stretchy. I also have something called Dysautonomia, where the autonomic nervous system doesn't work quite as it should."
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Christie Cox @ The Hypermobility Happy Hour
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Hypermobility Happy Hour "Christie Cox is a patient advocate who was diagnosed
with hypermobile Ehlers-Danlos Syndrome after a 17-year quest to find answers. Christie just published a fascinating book called Holding it All Together When You're Hypermobile."
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What should we write about next? Our volunteer team is busy working on what we think is interesting and educational content for our community. However, now we'd like to get your input! What would you like to read in the newsletter? Is there any topic that is important to your but has never been addressed? We want to provide you with the content you are most interested in. Therefore, our volunteers have put together a short survey on Surveymonkey with six topics you can choose from,
or, alternatively, you can write in your own text. Don't worry, this will only take a moment. If you want to take part in the survey, click HERE. Spotlight: Chronic Illness & Disability
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Disney introduces first plus-size heroine in animated short Reflect
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The Guardian "The animation, Reflect, tells the story of Bianca, a young ballet dancer who 'battles her own reflection, overcoming doubt and fear by channelling her inner strength, grace and power.'"
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How Dead to Me finished filming following Christina Applegates MS diagnosis
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Cosmopolitan "Halfway through filming, Christina was also diagnosed with multiple sclerosis, and according to the series creator Liz Feldman, they had 'already shot 50% of the final season by the time she received her diagnosis."
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It's no trick; Merriam-Webster says 'gaslighting' is the word of the year
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NPR "It can be a corporate tactic, or a way to mislead the public. There's also 'medical gaslighting,' when a health care professional dismisses a patient's symptoms or illness as 'all in your head.'"
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Apply for the Gensemer Hypermobile EDS Intern Program
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"The Norris Lab is launching the third year of the Gensemer hypermobile EDS summer research internship program on the campus of the Medical University of South Carolina (MUSC).
The purpose of the 'HIP' program is to increase the critical mass of researchers studying hEDS and empower patients with hEDS/HSD to be a part of the change." Find out more:
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Zebras Do Exist: The Diagnostic Odyssey of Rare Disease Patients
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"This case study on rare disease patients' diagnostic 'odyssey' - a long, complicated journey that inches forward towards a goal - reveals the effects of delayed and inaccurate
diagnoses of rare diseases."
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Ehlers-Danlos Syndrome and Psychiatric Symptoms: The perils of misdiagnosing EDS as a primary psychiatric condition
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"Not only is misdiagnosis a sin of commission, in that it directly causes psychological damage, but it also results in sins of omission. The symptoms of EDS can be treated
supportively with physical interventions if properly diagnosed."
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Thanks for reading The
Chronic Pain Partners Post!
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