Articles
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 […]
In memory of John Ferman, Founder and President of Chronic Pain Partners / EDS Awareness
With heavy hearts we are sharing that our founder and team champion John Ferman has peacefully passed away Tuesday night, November 11, 2025, surrounded by his daughters, Deanna and Deborah. John founded Chronic Pain Partners/EDS Awareness in 2011 in an effort to raise awareness and understanding about EDS and related conditions after his wife Carol […]
“Watch Out For Mum” – Wrongful Child Abuse Allegations Harms Whole Family
Parenting children with Ehlers-Danlos syndromes — or EDS — is a sport on its own. From the moment my children were born, I knew something wasn’t right. They were symptomatic from birth, but for years, doctors couldn’t figure out what was going on. And even when we finally found answers, the hardest battles weren’t against […]
EDS Unplugged Podcast, Episode 1: Invisible Disabilities Awareness with Kate Schultz
We are very pleased to announce the first episode of the EDS Unplugged podcast, brought to you by Chronic Pain Partners. In this episode, Cassandra and Marcia speak with Kate Schultz about what we do here at Chronic Pain Partners and living with EDS in the run up to Invisible Disabilities Week. Listen to Episode […]
New Study Reveals Immune Dysfunction in Hypermobile Ehlers–Danlos Syndrome
The Norris Lab published yet another new research finding regarding hypermobile EDS: the involvement of the complement system. Chronic Pain Partners has recently reported about the Lab’s groundbreaking discovery of Kallikrein, a gene believed to cause hEDS. We shared the initial findings and a later updated version of it. Published in ImmunoHorizons, this additional research […]
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.
