Chiari
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 […]
Outcomes of Craniocervical Instability Fusion Surgery in People with EDS
A recent study by Henderson et al. found significant benefits for EDS patients with severe craniocervical instability who underwent occipito-cervical fusion surgery. Craniocervical instability is one of the most severe neurological complications of the Ehlers-Danlos syndromes, causing many affected individuals symptoms such as headaches, severe full body pain, dizziness, nausea, blurred vision, paresthesia, fatigue, weakness, […]
Unraveling Tethered Cord for EDS Patients (simplified version)
Special thanks to EDS medical provider Pradeep Chopra, MD for reviewing this article curated by our media team. Learn more from his expertise in his video webinar on EDS Pain Management (discussion on tethered cord at the 1:13 mark). Intro: Hope for Tethered Cord Syndrome Patients Tethered Cord Syndrome (TCS) is a common condition found […]
New Cervical Spine Instability Publication: The Authors Explain Their Findings
For Chronic Pain Partners Newsletter, writer Christie Cox speaks with two pioneers in the Ehlers-Danlos community Leslie Russek and Susan Chalela, about their recent publication on upper cervical instability (UCI). Leslie Russek is a DPT, PhD, and Professor Emeritus of Physical Therapy at Clarkson University and an Orthopedic Certified Specialist Physical Therapist with over 30 […]
Surgery Prep: Meeting Your EDS Hospital Stay Needs
How to be prepared & stay safe when having a hospital stay with Ehlers-Danlos syndrome (EDS) This article will give an overview of ways you can prepare for a hospital stay when you have EDS, as well as tips on surgical prep and your own patient advocacy. People with Ehlers-Danlos syndrome (EDS) often need surgery […]
What it’s Like to Live with a Serious Invisible Illness Like EDS
by: ALICE HOWARTH From searching for a cure to being repeatedly dismissed, former model Tori Chalmers opens up about being part of the invisible illness community. Tori Chalmers ES Lifestyle Newsletter Having any kind of illness is tough but add to that the fact of it being invisible, at times it can seem impossible to cope with. In the […]
CSF – Unite@thehill – June 23-25, 2018
For the past few years, CSF has stormed Capitol Hill with you to make a difference for people living with Chiari malformation, syringomyelia, Ehlers-Danlos syndrome and many other related disorders… and it seems like Congress is really listening. I n February 2015, Congress voted to increase the NIH budget by $31.3 billion to support more biomedical research. In 2016, […]
