The Chronic Pain Partners Post
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EDS & NeurodivergenceSpecial
March’s EDS Awareness newsletter continues our deep dive into neurodiversity, exploring the intersection of Autism, other high sensory-related disorders, and EDS—a conversation long overdue in the community. As many EDS patients navigate sensory overload, hyperawareness, and unique neurological traits, we’ll take a closer look at what this means for daily
life, medical care, and self-advocacy. Plus, we’re thrilled to highlight new films and documentaries premiering in 2025, shedding light on the lived experiences of those with EDS and connective tissue disorders. Get ready for exclusive insights, expert perspectives, and must-watch storytelling that amplifies our voices like never before!
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Tired of being told "you're too sensitive?" Let's explore what it really means to be both hypermobile…
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Chronic Pain Partners introduced the topic of neurodivergence and Hypermobility Spectrum Disorders…
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Previous editions of Research Round-Up: Three, Two, One Welcome to the latest edition of Research…
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PodcastHighly Sensitive People, Neurodivergency, ADHD & Advocacy: Donna IreneThis episode contains an interview of Donna Irene, a travel photographer diagnosed with hypermobile Ehlers-Danlos, related conditions, and neurodivergency. Donna picked up a camera at the age of 13 and since then her
camera has taken her to 5 continents and 40 countries. Since her diagnosis in 2022 she has become an advocate for invisible disabilities and shares about her journey on social media. On this episode, Donna discusses her experiences with hEDS, neurodivergency & more.
WebinarIn November 2025, we plan to host an exclusive expert webinar with Dr. Jessica Eccles, one of the core researcher of the connection between neurodivergence and hypermobility. Learn more about Dr. Eccles work here. And stay tuned for the webinar sign-up, which we will share in one of the next newsletter editions. |
EDS Goes To The Big Screen
New EDS DocumentariesThis year, not only one but several documentaries on EDS are coming out! First, check out the trailer of "Complicated", a ground-breaking feature documentary that had its world premier at SLAMDANCE Film Festival on February 23! (If interested, you can become a member of Slamdance to watch it now, or hold out for it to come to streaming platforms or similar hopefully
soon to spread awareness of EDS, the complexities and challenges it can bring to families. It's only available till March 7: https://slamdance.com/festival-passes/) We had the honor to review the film and interviewed filmmaker Andrew Abrahams. Additionally, another documentary just had
its premier: Exhausted Existence, which we will review as well. See the announcement below.
For many living with Ehlers-Danlos syndrome (EDS), the road to diagnosis is long, exhausting, and…
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Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several…
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CPP's Own DocumentariesProud StutterCPP's short doc Proud Stutter, a short film featuring Maya, who grew up with a stutter she believed she needed to overcome, embarking on a transformative journey of self-acceptance, just won its first award and is screened at several film festivals. If you'd like to learn more, please have a look at the festivals on the bottom of this
page:
Proud Stutter is a short film featuring Maya, who grew up with a stutter she believed she needed to…
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Much More Than ThatAnd a new short documentary, Much More Than That, just came out. Much More Than That is a 15-minute short film that delves into the lives of the Pollock family, who share deep connections that transcend their heritage. Jack and his mother Maria both live with Ehlers-Danlos syndrome, a rare and challenging condition, and are also neurodivergent. As members of
the LGBTQ community, Jack and Maria navigate the complexities of life at the intersection of disability and gender identity. This poignant film also reveals how Maria and Jack continuously support each other in finding their identities. Through resilience and love, the Pollocks redefine what it means to thrive amidst adversity. Watch the trailer below, or learn more here: https://www.chronicpainpartners.com/much-more-than-that/
Tell us WHAT WORKS FOR YOU: We'd like to know from you what actually helped with your EDS symptoms! Fill out the survey, and we will share the most helpful resources by the community for the community in our next newsletter. Survey: https://widget.surveynoodle.com/EDSfavs EDS Re-Classification: Speak Up on What You Need This anonymous survey is designed to ask the patient community what their experience has been with the EDS classification system and diagnostic criterion models and as well as their needs and expectations for communication guides and tools desired when next reclassification is published in 2026. Consent is given by completing the survey. Note: Full open access to
results will be published in EDSAwareness.com. Survey closes March 31, 2025 as an independent grassroots effort to learn what the patients' needs are for enhanced communication and diagnostic tools. *The previous survey's stated purpose (before Feb 12, 2025) to submit an abstract research paper to the EDS Society has changed, but the data resulting will not. All data will be publicly available. Thank you for sharing your voice!
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Thanks for reading the Chronic Pain Partners Post!
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