Patients born with Ehlers-Danlos syndrome often fight many for years for proper diagnosis, recognition, and treatment.
Most patients wait more than a decade to obtain diagnosis.
Their fight can be a difficult, tortuous road. Because of the multisystemic nature of many forms of Ehlers-Danlos, too many patients struggle for over a decade to obtain comprehensive diagnosis and treatment for their overall condition. As a result, many are not diagnosed until much later in life when damage to joints can be irreversible.
The Ehlers-Danlos Society strives for the time when all those with Ehlers-Danlos syndrome benefit from respect and recognition of their conditions—before its too late—by gaining access to early identification, diagnosis, and effective treatments.
By declaring #ItsOurTime, The Ehlers-Danlos Society seeks to enlighten the world’s medical, scientific, public health, and patient communities about the importance of awareness, understanding, and early diagnosis in the lives of each person affected by these too-often degenerative, debilitating, potentially disabling disorders.
A devastated community
We asked the Ehlers-Danlos community how many years it took to be diagnosed from the onset of their symptoms. Their answers are shocking. This needs needs to change.
The Ehlers-Danlos Society is committed to improving patients’ lives—worldwide—through support of the pioneering research with our esteemed medical and scientific panel, global awareness, and a solid network of good information and mutual support.
Our commitment to collaboration and dedication to discovery
Working in close collaboration with the world’s leading experts in the study of Ehlers-Danlos and its myriad associated conditions, The Ehlers-Danlos Society is dedicated to nothing less than a total transformation of our understanding of Ehlers-Danlos and the mechanisms by which it causes so much pain.
As a global resource for anyone looking for answers and support, The Ehlers-Danlos Society will hold events throughout the world and online so that geography does not determine the quality of life for those who too often suffer alone and in pain.
#ItsOurTime for educating the medical world, to ensure symptoms will be recognized sooner and diagnosis is no longer not such a battle to receive.
Strength begins with hope
For the people of The Ehlers-Danlos Society, “Strength begins with hope” and hope begins with better awareness, understanding, and an energized community united in our fight for the treatments we have sought so long to receive.
Show your support
Show your support and raise awareness by striping your profile pictures on social media! Follow the link below.