EDS

An analog camera

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 […]

Tips for Ehlers-Danlos Caregivers

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 […]

An illustration of a blue and purple nerve cell and a magnifying glass on yellow background. Text: New research on EDS, POTS & SFN. Small Fiber Neuropathy is a Common Feature in HEDS, Research Finds.

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 & […]

Anoushé, a woman wearing an athletic sports outfit, with a colorful leggings and a blue shirt. She is barefoot, has tape around her hand and fingers and around the elbow of her missing other arm. She wears a red and beige head scarf and is smiling slightly.

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, […]