IMAGINE spending years, or even your entire life, trying to figure out what is wrong with you while being told “it’s all in your head”. The Ehlers-Danlos Syndromes (EDS), are complex connective tissue disorders that are frequently misunderstood and stigmatized within the healthcare system.
This Canadian documentary explores the difficult reality of living with EDS, focusing on the common experience where patients spend years searching for an accurate diagnosis and adequate care. Through testimonials from patients and healthcare professionals, this project seeks to shift medical attitudes to ensure those affected receive the same quality of services as any other patient. EDS is not an imaginary disease!
Join us at the premiere of this documentary either in-person or virtually!
When: May 28, 2026 at 3:00 pm
Where: Auditorium of La Grande Bibliothèque
475 Boul. de Maisonneuve E,
Montreal, QC
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The EDS Canada Foundation is also holding “watch parties” for the premiere
on May 28 at 3:00 pm at the following two locations:
Georgian College, 1 Georgian Dr., Barrie, Ontario, L4M 1E9
Empact Wellness, 3325 Harvester Rd., Unit 8, Burlington, Ontario, L7N 3N2
Beyond the myths: key truths
- More common than you think: The hypermobility disorders and Ehlers-Danlos syndromes are no longer considered rare, affecting approximately up to 1 in 500 people in the population.
- Not just “bendy bodies” and “stretchy skin”: Contrary to the belief that it is a benign condition limited to joints and skin, EDS is a complex disease that can cause severe, disabling musculoskeletal disorders, chronic pain, and is accompanied by a multitude of other conditions such as – and not limited to – gastrointestinal problems, 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 by a genetic test, but relies on clinical criteria, physical exam, and medical history. Symptoms can be similar between all types of EDS. It is recommended to do genetic testing to detect a possible rare type or another hereditary connective tissue disorder. Doctors must be aware of the most severe type, vascular EDS.
- Complexity is not untreatability: While there is no cure, proper diagnosis allows for management strategies that can significantly relieve pain and improve quality of life through case-by-case care.
Looking for more information on EDS?
Breaking the bias: challenging medical prejudices
Our documentary addresses critical biases that frequently hinder patient care:
- The “invisible” barrier: EDS does not always show on the outside. It can be very different from person to person in its presentation, but it causes many illnesses and suffering.
- The gender gap: Because women are often more severely affected, as for other female diseases, their symptoms are frequently dismissed and said to be psychological. Not being believed causes distress and trauma which in turn increases pain.
- The “trendy” trap: Increased awareness globally has led some to dismiss EDS as a “fashionable” or “catch-all” diagnosis, when in reality, more people are simply gaining access to reliable information and recognizing their symptoms.
The path forward: proposed solutions
Our documentary also highlights several ways to improve recognition for better diagnosis and care for EDS in the medical community:
- Improving medical training to better recognize joint hypermobility and the systemic manifestations that can prompt consideration of all types of EDS.
- Establishing multidisciplinary clinics and integrating EDS care into physical rehabilitation centres.
- Encouraging doctors to actively listen to and consult with affected individuals and their families.
This Canadian documentary was produced by the Regroupement québécois des maladies orphelines (RQMO)/Quebec Coalition of Orphan Diseases in collaboration with the EDS Canada Foundation. It was directed by Gail Ouellette, PhD., genetic counsellor, and expert on EDS.
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Want to help us build a better future for the EDS community?
Regroupement québécois des maladies orphelines (RQMO) /Quebec Coalition of Orphan Diseases
- JOIN OUR MAILING LIST (Bilingual)
- DONATE THROUGH RQMO
EDS Canada Foundation