A news source by and for the EDS community.

It's already the end of the year and with this last issue of our newsletter in 2023, we want to share the very best of CPP videos, articles, patient guides and news that made headlines within the EDS community in 2023. Enjoy our BEST OF 2023 Chronic Pain Partners Post and hope to see you all in 2024! Happy Holidays and a great start into the new year with much love and less pain! 

Much Love, 

The CPP media team

What do you want to read next?

We want to hear what you'd like to read here next year! 

Share your opinion with us via this super short survey: https://www.surveymonkey.com/r/EDS_TopicIdeas

More about Maya's Case:

https://people.com/take-care-of-maya-trial-testimony-last-time-maya-saw-mom-8349483

https://people.com/maya-kowalski-testifies-take-care-of-maya-trial-hospital-staff-8349262

https://stpetecatalyst.com/maya-kowalksi-takes-the-stand-in-all-childrens-trial/

https://people.com/take-care-of-maya-trial-hospital-found-liable-mothers-suicide-munchausen-by-proxy-accusations-8400157

Other Recent News: 

A woman with EDS in New Zealand dies because doctors don't believe her: https://people.com/ehlers-danlos-new-zealand-stephanie-aston-dies-7966639

Best Of 2023 EDS News: 

Journalist Sarah Lazarus wrote this ground-breaking article on EDS for CNN: https://edition.cnn.com/2022/12/24/health/hypermobile-ehlers-danlos-syndrome-health-hnk-spc-dst-intl/index.html

Research

Plasma proteomic profiling in postural orthostatic tachycardia syndrome (POTS) reveals new disease pathways: https://www.nature.com/articles/s41598-022-24729-x

Presentation and physical therapy management of upper cervical instability in patients with symptomatic generalized joint hypermobility: international expert consensus recommendations: https://www.frontiersin.org/articles/10.3389/fmed.2022.1072764/full

RNA-Seq of Dermal Fibroblasts from Patients with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders Supports Their Categorization as a Single Entity with Involvement of Extracellular Matrix Degrading and Proinflammatory Pathomechanisms: https://www.mdpi.com/2073-4409/11/24/4040

A novel mutation in collagen transport protein, MIA3 gene, detected in a patient with clinical symptoms of Ehlers–Danlos hypermobile syndrome: https://advances.umw.edu.pl/en/ahead-of-print/158028/

Resources

Getting Disability Benefits for Ehlers-Danlos Syndrome: https://www.disabilitysecrets.com/resources/disability/getting-disability-benefits-ehlers-danlos-synd

Wheelchair Buying Guide: https://scootaround.com/en/wheelchair-buying-guide

Being Your Own Advocate in a Medical Setting: http://thezebranetwork.org/being-your-own-advocate

Connective Tissue Coalition: https://www.connectivetissuecoalition.org

Support a fellow EDSer's Project

Suri Ellerton is a filmmaker, has three children, and lives with Ehlers-Danlos Syndrome and various comorbid conditions. In this interview with Chronic Pain Partners’ Karina Sturm, Ellerton shares her EDS journey, what it means to be a disabled parent, and how her own experiences relate to her latest film project, “The Game.” 

Read the interview with Suri HERE.

You can donate to her fundraiser HERE.

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