The Chronic Pain Partners Post
A news source by and for the EDS community.
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Meghan O'Rourke and The Invisible Kingdom
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ABILITY Magazine
"Medicine has what I call a women problem. It has a history of gaslighting women and dismissing women's testimony."
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Selected Heritable Disorders of Connective Tissue and Disability
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National Academies
This is a must-read for everyone with a connective tissue disorder. Jon Rodis shared this with us.
“SSA asked the National Academies of Sciences, Engineering, and Medicine to convene an expert committee that would provide current information regarding the diagnosis, treatment, and prognosis of selected HDCTs, including Marfan syndrome and the Ehlers-Danlos syndromes, and the effect of the disorders and their treatment on functioning. The resulting report, Selected Heritable
Disorders of Connective Tissue and Disability, presents the committee's findings and conclusions.”
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For our next couple of newsletter editions, the Chronic Pain Partners media team interviewed a group of people to highlight the diversity of our community and emphasize the challenges to arise when a person belongs to more than one
minority. Stay tuned for more interviews by and for all people in our community.
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Cassandra Campbell on finding acceptance as a person with EDS
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Chronic Pain Partners
"Acceptance doesn't mean giving up. It means this is what it is. How can I now navigate my life around my health to the best of my ability? And where can I find my joy and my happiness?"
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Archer Young about navigating health care as a trans man with EDS, transitioning, and studying with a disability
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Chronic Pain Partners
"Every time I got the pain scale thrown at me, I was saying a lower number than what I was actually feeling because I thought that showed strength. Then I realized doing so just meant I was not going to get the help I needed."
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Ehlers-Danlos syndromes, gynecological complications & sexual health
[CW: The following article is for an adult audience due to its content and language. We are sharing challenges related to having sex with EDS and ways of overcoming those.]
For our August newsletter, the Chronic Pain Partners media team brought together people from the EDS community and medical professionals to share their opinions about a topic that's often ignored and rarely openly spoken about: the sexual health of people with Ehlers-Danlos syndromes. Journalists Jackie Saa and Karina Sturm spoke with Mary Cordaro, admin of the "Sex-tacular EDS
Zebras" group on Facebook, Sarah Cook, Physician Assistant, and Dr. Susan Delaney, MD and sex therapist, about gynecological and other problems that complicate having sex and how to overcome those barriers.
You can read the full article
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Tinsel Girl with Cherylee Houston
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BBC
Cherylee Houston shared her wonderful BBC comedy podcast with us, which presents her daily struggles with EDS in a humorous way.
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NEW EDS BOOK: Holding It All Together
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Christie Cox
"In Holding It All Together, Christie Cox offers an in-depth exploration of invisible chronic illness like hypermobile Ehlers-Danlos Syndrome (hEDS). After facing and learning to manage the many life-altering changes that accompany chronic illness, Christie discovered that many different medical stories carry the
same burdens - emotional, physical, financial."
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Podcast
"Shared wisdom and tips for self-care, wellness, mindfulness, compassion, gratitude, finding joy, and much more."
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Dr. Pradeep Chopra: Overview on EDS and Pain (Part 1)
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Hypermobility Happy Hour
"On this episode (part 1 in a series), Kerry interviews Dr. Pradeep Chopra, who gives an overview regarding treatment of Ehlers-Danlos syndromes and pain."
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Spotlight: Chronic Illness & Disability
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Opportunity for Disabled Artists: The Create Fund
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Shutterstock
"People with disabilities live full lives. Their experiences are as diverse as they are. That's why we're partnering with the Global Alliance for Disability in Media and Entertainment along with the World Institute on Disability to provide production grants to artists with disabilities and their allies. This initiative aims at building more authentic representations of disability
across a broad range of environments, relationships, and issues."
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Study Shows Disability Representation Onscreen Is Increasing, But Still Falls Short
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New York Times
"The study published Tuesday also showed that television continues to lag behind film when it comes to representation of characters with disabilities."
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PBS Documentary Explores Shortcomings Of Disability Support System
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Disability Scoop
"The 60-minute film 'He's My Brother' follows co-director Christine Hanberg and her family as they look at what their future holds with her brother Peter, 31, who has multiple disabilities."
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Association of mast-cell related conditions with hypermobile syndromes: a review of the literature
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Jon Rodis sent us this interesting review of the relation between MCAS and EDS.
"The overlap of findings associated with MCAD and the immune-mediated and rheumatologic conditions in patients with hEDS/HSD may provide an explanation for the relationship among these conditions and the presence of chronic inflammatory processes in these patients."
This article is open access and free to read for everyone.
Read
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Single-level posterior lumbar fusions in patients with Ehlers-Danlos Syndrome not found to be associated with increased postoperative adverse events or five-year reoperation.
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"Adult EDS patients found not to be at increased risk of 90-day adverse events.
Within five years, EDS patients also did not have increased risk of reoperation."
This article is also open access and free to read for everyone.
Read study.
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Thanks for reading The
Chronic Pain Partners Post!
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