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A Cheerful Gift Guide for People with EDS, Chronic Pain, Chronic Illness, Disability, and Those Who Love Them: Chronic Pain Partners’ 2025 Gift Guide
Shopping for someone with chronic illness or chronic pain can feel weirdly high stakes.Should you get something comforting?Something fun?Something practical?Something that has nothing to do with their medical life at all? The answer: Yes to all of that. This guide mixes comfort items, purely-for-fun treats, and practical helpers that can make life a little easier. […]
New App Can Help Screen for EDS
The Hypermobility Assessment Tool (HAT) app empowers patients who suspect they have EDS by putting the first steps of the screening process directly into their hands.
Research Round-up, Edition Six
Previous editions of Research Round-up can be found at the following links: Edition 5 (Pediatrics) Edition 4 (Neurodivergence) Edition 3 Edition 2 Edition 1 Howdy, partners! This Research Round-up has roped in a whole herd of topics for you. We hope you enjoy the read, learn a thing or two, and feel […]
September is Pain Awareness Month
September is recognized internationally as Pain Awareness Month. (Look for hashtags #PainAwarenessMonth and #ThisIsPain on social media). Most types of Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorder unfortunately cause varying amounts of pain for most patients, so Chronic Pain Partners/EDS Awareness is joining the chorus to raise awareness. It’s in our name, after all!
Update On Gene Linked to Hypermobile EDS
A new study, led by Dr. Cortney Gensemer, marks a genetic breakthrough in hEDS research. The KLK15 variant (p.Gly226Asp) has been identified as a direct disease-causing gene in hypermobile EDS, causing connective tissue dysfunction and immune system dysregulation.
Cerebral Venous Outflow Disorders: What it is and Why EDS Patients Should Know About it
Cerebral venous outflow disorders describes a spectrum of conditions related to issues with how fluid drains from the brain.Experts are observing a connection between connective tissue disorders (like hypermobile EDS) and cerebral venous outflow disorders. Cerebral venous outflow disorders can cause pressure headaches (that often worsen when lying flat), dizziness, pulsatile tinnitus (a rare vascular form of tinnitus), neck pain, tenderness at the base of skull, vision disturbances, ‘brain fog’, and cognitive dysfunction. Cerebral venous outflow disorder may look different when it presents in individuals with connective tissue disorders than in individuals without, creating diagnostic challenges.
22 Ways to Celebrate EDS and HSD Awareness Month
20 free reasons plus two more at no extra charge! May is designated as Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorder (HSD) Awareness Month. Throughout the month, there are fun ways to show your stripes and help raise awareness of these often-overlooked conditions. Check out some of the ways below that you can help strengthen […]
Current Administration Threatens Medicaid – April 2025
Since the new administration took office in January, policy changes have been moving fast. Currently, the Republican led Congress (the House) is dangling the threat of major budget cuts to social safety nets over the senior and disabled community, leaving a lot of EDSers and others quite stressed about the continuity of their health care […]
