Because with EDS, every bone is a funny bone.
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Interview with Dr. Norris on finding the Cause(S) for hEDS!
For Chronic Pain Partners, journalist Karina Sturm spoke with Dr. Russell Norris from the Norris Lab at MUSC, a research laboratory dedicated to finding the genetic cause(s) for hEDS. Norris shares details about their current research and how it will change care for people with hEDS.
You can read the interview
Interview with Donna Sullivan, TCAPP, about wrongful child abuse allegations and medically complex children
Journalist Karina Sturm spoke with Donna Sullivan, board member of The Coalition Against Pediatric Pain (TCAPP). Sullivan lives with EDS and has several affected children as well. In this interview, she shares with Chronic Pain Partners her decade-long experience working with families accused of child abuse due to a medically complex child, a film project on the
same topic she has been planning for years, and how her organization supports these families.
You can read the interview
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What is Ehlers-Danlos syndrome? Halsey reveals diagnosis
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Today
“I was hospitalized for anaphylaxis a few times and I had some other stuff going on. Basically, after seeing like 100,000 doctors, I got diagnosed with Ehlers-Danlos syndrome, Sjögren's syndrome, mast cell activation syndrome, POTS.”
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Living with a rare genetic disorder
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Pursuit
"Although there is no cure, there are treatments which help with the wide range of symptoms and may delay progression."
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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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Jack Briar Pollock on challenges of being trans with EDS
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Chronic Pain Partners
"When you're closeted and when you haven't received your diagnosis, you feel like you always live in a body that failed you. And it did. I couldn't do a lot of things that I wanted to do. I wanted to be on the track team. I wanted to do ballet. I wanted to be in the Girl Scouts at one point, but the people that were there just
didn't accept me."
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Kaleena Deshawn on challenges as a person of color with EDS, Fibromyalgia and ME/CFS
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Chronic Pain Partners
"When my sister and I were trying to get a diagnosis, we learned more about EDS by seeking out the advice of support groups. Initially, going into those, it was a very white space, and there was this notion that black people wouldn't have EDS because it's a European disease."
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New book featuring a character with EDS!
Jules Machias about their EDS journey and new middle-grade book "Fight + Flight"
The Chronic Pain Partners media team is excited to introduce the EDS community to the new middle-grade fiction book "Fight + Flight," which features a character with EDS! Journalist Karina Sturm had the pleasure to talk to author Jules Machias about their life with EDS, their career as a writer, and their recently published book "Fight + Flight."
You can read the interview
Medical writer Sarah Cook will review "Fight + Flight" for our August newsletter edition.
Watch Bend or Break, a new EDS Documentary
The new award-winning EDS documentary "Bend or Break" from Canada has just been released. If you haven't seen it, you can now do so free of charge!
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The journey to diagnosing a mysterious illness
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Linda Bluestein @ KevinMD
“If your patient has a connective tissue disorder like one of the Ehlers-Danlos syndromes, you can help without becoming an EDS expert - although that would be OK, too.”
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Emily Rich OT on Occupational Therapy for EDS/POTS
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Hypermobility Happy Hour
"On the most recent episode of Hypermobility Happy Hour, Kerry Gabrielson interviews Emily Rich, OT, about her practice as an occupational therapist working with patients with EDS, hypermobility conditions, and comorbidities like POTS."
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Spotlight: Chronic Illness & Disability
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Patient Translator: What to Say to Someone Who
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The Mighty
"At some point in your life (or, let’s face it, many times), someone you care for – a friend, a colleague, a partner, a child – will be diagnosed with a health condition. And when that time comes, your brain will likely start to misfire with a slew of half-baked yet earnest questions: What should I say? How should I act? What can I do? What’s actually going to be
helpful?"
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Expert opinion: Dr. Chopra on psych aspects of eds
EDS expert and pain specialist Dr. Pradeep Chopra contacted Chronic Pain Partners to speak about a
recently published review on the psychological and psychiatric aspects of the Ehlers-Danlos syndromes. Dr. Chopra's statement can be read HERE. Additionally to Dr. Chopra's statement, journalist Karina Sturm talked
to Dr. Chopra in an extensive interview. The interview with Dr. Chopra can be found HERE. Also, John Ferman, CEO of EDS Awareness (Chronic Pain Partners), wrote a personal essay about his experience with "It is all in your head" and psychiatrists. John's essay can be read HERE.
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Hypermobile Ehlers-Danlos Syndrome: An Update on Therapeutic Approaches for Pain Management
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Practical Pain Management
"Current evidence and clinical thinking on the benefits of physical activity and medication to manage chronic pain and daily function in patient with hEDS."
Read
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International Perspectives on Joint Hypermobility
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"There is exponential clinical and research interest in joint hypermobility due to recognition of the complexity of identification, assessment, and its appropriate referral pathways, ultimately impacting management."
Read study.
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Thanks for reading The
funny bone news!
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