EDS
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.
The Hidden Disabilities Sunflower Lanyard: Making the Invisible Visible
The Hidden Disabilities Sunflower lanyard can help patients with EDS signal to others that they may need extra understanding, support, or time in workplaces, shops, or other public spaces.
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.
Documentary Films on Ehlers-Danlos Syndrome
Over the last year, the Ehlers-Danlos Syndromes have been increasingly present in media. Several films have depicted different aspects of the lived experience of families with Ehlers-Danlos Syndromes and comorbid conditions around the globe. The following is a dynamic list of documentary films on EDS and its comorbid conditions based on the release date. Ehlers-Danlos […]
The 7-Step Recipe for EDS Caregivers: Tips for Helping Patients
One of the earliest lessons in flight training is the aviation order of operations: Aviate, Navigate, Communicate. In pilot training, those words mean the following. Aviate: Use the skills to maintain control of the aircraft. Navigate: Know where you are, and where you intend to go. Communicate: Let someone know your plans and needs. Maybe […]
Small Fiber Neuropathy is a Common Feature in Hypermobile EDS, Research Finds
New research by a German group of scientists published in the European Journal of Neurology seeks to understand if there is an underlying common cause among hypermobile EDS (hEDS), small fiber neuropathy (SFN), and postural orthostatic tachycardia syndrome (POTS). Their research sheds light on a possible common mechanism behind those three conditions. SFN, POTS & […]
Para climber Anoushé Husain on “believing in the impossible”, her cancer diagnosis, EDS journey, and the sports she loves
For our December newsletter, journalist Karina Sturm interviewed Anoushé Husain. Husain is a civil servant and paraclimber who broke the Guinness Book of World Records for climbing the greatest distance on a climbing wall in one hour, as a female climber with only one hand. She was born with half an arm, has beaten cancer, […]
