Upcoming EDS documentary - A real disease said imaginary
From the organization treating rare disease in Quebec
https://rqmo.org/unevraiemaladie/
Here the translation:
Beyond the Myths: Essential Truths
More common than we think: Hypermobility disorders and Ehlers-Danlos syndromes are no longer considered rare, affecting up to approximately 1 in 500 people in the population.
● Much more than “flexible bodies” and “stretchy skin”: Contrary to the belief that this is a benign condition limited to the joints and skin, EDS are complex disorders that can cause severe and disabling musculoskeletal problems, chronic pain, and a wide range of other conditions, including, but not limited to, gastrointestinal disorders, dysautonomia, mast cell activation syndrome, chronic fatigue syndrome, and neurological disorders.
● No single test: The diagnosis of the most common type, hypermobile EDS (hEDS), cannot be confirmed through genetic testing. Instead, it is based on clinical criteria, a physical examination, and medical history. Symptoms can be similar from one type of EDS to another. Genetic testing is recommended to detect a rare type of EDS or another hereditary connective tissue disorder. Physicians must also be aware of the most severe type, vascular EDS.
● Complex does not mean incurable: Although there is no cure, an accurate diagnosis makes it possible to implement management strategies that can significantly reduce pain and improve quality of life through care tailored to each individual.
Looking for more information about EDS?
VISIT THE RQMO WEBSITE
VISIT THE EDS CANADA FOUNDATION WEBSITE
Breaking Bias: Challenging Medical Prejudice
Our documentary addresses important biases that often interfere with quality of care:
● The “invisible” barrier: EDS are not always visible. Their manifestations vary greatly from one person to another, but they cause many symptoms and a great deal of suffering.
● The gender gap: Women are often more severely affected, and as with other conditions that predominantly affect women, their symptoms are frequently minimized or attributed to psychological causes. Not being believed creates distress and trauma, which can intensify pain.
● The “trend diagnosis” trap: Increased awareness around the world leads some people to dismiss EDS as a “trendy” or “catch-all” diagnosis, when in reality, more and more people simply have access to reliable information and are recognizing their symptoms.
Moving Forward: Paths Toward Solutions
Our documentary also highlights concrete actions to improve recognition, diagnosis, and care related to EDS:
● Improve medical training to better recognize joint hypermobility and systemic manifestations that may point to all types of EDS.
● Establish multidisciplinary clinics and integrate EDS-related care into physical rehabilitation centres.
● Encourage physicians to actively listen to affected individuals and to collaborate with them and their families.
This Canadian documentary was produced by the Regroupement québécois des maladies orphelines (RQMO) in collaboration with the EDS Canada Foundation. It was directed by Gail Ouellette, PhD, genetic counsellor and EDS expert.