Research
New CCI Research: Understanding the Frequency of Neurosurgical Interventions in Connective Tissue Disorders
A recent study conducted by Ruhoy et al. investigates the frequency of comorbidities and the need for neurosurgical interventions in individuals with connective tissue disorders (CTDs), offering valuable insights into the multifaceted challenges faced by this patient population. What’s the study about? CTDs are a diverse group of disorders that impact connective tissue, leading to […]
Research Round-Up, Edition 4: Neurodivergence
Previous editions of Research Round-Up: Three, Two, One Welcome to the latest edition of Research Round-Up! If you’ve missed previous editions and want to know what’s happening in the world of EDS research, click the links above. This month, we’re doing something a little different. Instead of individually discussing some recent research articles, we’re taking […]
EDS Expenses Exposed: Report Peeks at Financial Burden of Living with Ehlers-Danlos
If you or someone you know is dealing with Ehlers-Danlos Syndromes (EDS), understanding the financial impact is crucial, and until now could not be quantified by research. A recent study’s results published in early 2025 recaps the highlights. The new report, The Financial Impact of Ehlers-Danlos Syndromes on Patients in the United States in 2022 […]
Digesting the Facts: Tackling Gastrointestinal Challenges in EDS
Living with Ehlers-Danlos Syndrome (EDS) often feels like piecing together a puzzle without being able to visualize the final desired image. Patients poke at fixing separate symptoms while no one is tying the whole picture together. This creates difficulties when multiple systems come together like they do in the nutrition and waste mechanisms within the […]
Neurodivergence and Hypermobility: Understanding the EDS Connection
Imagine waking up each day with a body that feels both familiar and unpredictable, where the simplest movements demand careful calculation, and even routine tasks like washing the dishes can hold hidden challenges and pain. This is the world of those living with Ehlers-Danlos Syndrome (EDS), a condition that intertwines with the very fabric of […]
Research Round-Up, Edition Three
Welcome back to Research Round-up where we feature some of the latest developments in Ehlers-Danlos syndrome (EDS) research. Hitch up your horse, gather ‘round the campfire, and see what we have in store for you today. ICYMI: a possible blood test for hEDS? Cardiology“Longitudinal echocardiography in pediatric patients with hypermobile Ehlers-Danlos syndrome”Published in the American […]
New Research Study Finds Everything is Connected, As Many Patients Suspected
A wake-up call to the medical community sent directly with data from commercial health insurers A new study focused on the prevalence of multisystem diagnoses among hypermobile Ehlers-Danlos Syndrome (hEDS) patients sheds light on a critical aspect of this complex condition: the widespread systemic impact it has on the body and the connection to other […]
Research News: Could a Blood Test for hEDS & HSD Be Possible?
The EDS Society announced a promising breakthrough in research they funded published September 3, 2024 by a group of Italian scientists in the American Journal of Genetics using their HEDGE registry for the US cohort. Scientists have identified a specific protein in the blood that appears to be present at higher levels in individuals […]
