“We are striving toward a time when all those with Ehlers-Danlos Syndrome have their right for an early diagnosis, good management, respect and recognition for their condition. A time when geography does not determine your quality of life and when you tell someone you have Ehlers-Danlos Syndrome, they do not ask what that is.”
Ehlers-Danlos syndrome (EDS) is a condition little known amongst the wider public, even though the most common type of the condition, hypermobile EDS, is thought to affect more than 1 in 1000 people. This type of EDS is massively mis and under diagnosed, with patients struggling for decades for a diagnosis. The condition is little understood and recognised within the medical profession due to its complex and multisystemic nature.
As a connective tissue disorder, EDS can affect almost any part of the body. The most common type of EDS is characterized by joint hypermobility, frequent subluxations and dislocations (multiple times daily for many patients), chronic pain, autonomic dysfunction, gastro problems, stretchy skin and a range of multisystemic symptoms. Rarer types of EDS can be life limiting.
Early diagnosis and treatment is crucial for patients, but globally the majority struggle for recognition and access to this. The delay in diagnosis and management of the condition can lead to physical disability, patients living for years in chronic pain and a range of issues misdiagnosed and untreated.
The Ehlers-Danlos Society is looking to effect change and progression in the World of Ehlers-Danlos syndromes by bringing together medical professionals from all over the world to work on ground breaking treatment. A global symposium was held earlier in May to mark the launch of the charity, to mark the start of Ehlers-Danlos Syndrome Awareness Month and to bring together pioneering medical professionals for the first time in 20 years to define the diagnostic criteria and treatment guidelines. The outcome of the symposium will be guidelines that will be distributed throughout the World to GP’s, Geneticists, Rheumatologists, Consultants and Surgeons to help recognise patients, diagnose and treat correctly.
Visualsoft’s Social Media Team Leader, Èrin Simons, attended the symposium in New York to allow the Society to communicate the process and findings of the presentations to thousands of patients globally. Social Media is a vital tool for the community, with many patients often only receiving diagnosis due to the diligence of others online. The Society’s social channels are a lifeline for the community, providing support and knowledge and connecting the dots for many struggling for answers.
The Ehlers-Danlos Society’s latest campaign #ItsOurTime focuses on their mission for recognition and early diagnosis for patients. Through social media the EDS community were asked how long it took for them to be diagnosed; their answers were shocking.
Visualsoft is proud to partner with The Ehlers-Danlos Society and to provide support in making a difference globally. For more information visit ehlers-danlos.com