July 25, 2022

Holly Clayton never imagined she’d end up dedicating her life’s work to a rare hereditary and connective tissue disease. That changed during her undergraduate studies after she began dating someone diagnosed with Ehlers-Danlos syndrome (EDS).

Today, the Seneca professor and PhD of psychology candidate at York University has a five-year-old son who has been diagnosed with EDS. She has also written three studies about EDS patients. 

“I knew there was good chance my son would have EDS,” Ms. Clayton said. “I thought that as a researcher, with all the resources I have, I could set him up for success when it came to managing EDS in his life.”

There are several types of EDS. Patients with the most common form have hypermobility in their joints and unusually stretchy skin. They are prone to sprains and dislocations and often experience chronic pain and fatigue among other symptoms.

Ms. Clayton’s research focuses on proprioception in EDS — issues concerning the body’s ability to sense its location, movements and actions. 

“People with EDS look normal,” she said. “But the pain and the fatigue they experience can be prolific. They may not be able to participate in gym class or they may need to go home early or be accommodated at work. The pain they experience can lead to anxiety or depression. People have had to give up careers because of EDS.”

This summer, she is using EDS to teach her Foundations of Psychology students at Seneca about psychological issues of chronic illness. One of her resources is the documentary Bend or Break, for which she was interviewed.

Bend or Break won the Best Directors and Documentary Films categories at the Calcutta International Cult Film Festival and Best Sound Design at the Toronto Independent Festival of Cift.

As Ms. Clayton expected, none of her students had heard of EDS before.

“In fact, not many health-care professionals are even familiar with it,” she said. “A lot of people with EDS aren’t believed by their doctors. They have post-traumatic stress disorder from visiting their doctors.”

Mitch Martow, the star of Bend or Break, is one of them. A patient advocate for EDS, he was one of the people Ms. Clayton recruited for a study. His story caught the attention of filmmakers Karan Sharma and Sidhant Sharma after he gave a TED talk at York University to promote EDS awareness.

“Mitch’s case is one of the most extreme I’ve encountered,” Ms. Clayton said. “Due to his sleep issues, he has a 48-hour cycle — 31 hours awake and 17 hours asleep.”

While Ms. Clayton was interviewed for the film, she agreed with the directors’ decision to focus the documentary on patients’ lived experiences and omit footage from scientific experts and researchers.

Through her involvement with the film, Ms. Clayton also arranged a co-op position for a former student of hers from Seneca’s College Opportunities program. Daniel Bensimon, who was credited as an assistant director in Bend or Break, is now pursuing further education in film studies because of this experience.

“That’s the cool thing about this — you don’t need to be a researcher to get involved with EDS,”  Ms. Clayton said. “If you are a business student, you can help someone with EDS with their business. There are many innovative ways to get involved.”

Currently, Ms. Clayton is conducting a cannabis study for chronic pain in EDS and hoping to inspire her students to learn more about the psychological experiences of other diverse groups they may encounter.

“Film is a powerful way to spread awareness about a disorder that is stigmatized,” she said. “Even if you don’t have a personal connection to EDS, this documentary will evoke strong emotions. Hopefully, that will motivate people to spread the word or get involved with the cause more directly.”

Bend or Break is available for viewing on YouTube.