Dr. Ranita Manocha (in navy blazer) and her team field questions at their Hope for Hypermobility event at Foothills Medical Centre on April 29. The event gave researchers from the University of Calgary and Mount Royal University the opportunity to connect directly with patients who shared their wishes on future research priorities.
CALGARY — For most patients undergoing rehabilitation for joint issues, it’s a lack of motion that’s the issue — not enough range of motion in their knees, hips or shoulders. For people living with hypermobility issues, however, too much motion can be equally debilitating.
A recent Hope for Hypermobility event at Foothills Medical Centre gave patients and family members the opportunity to hear about local hypermobility research, to ask experts about related conditions, and to meet others who face similar challenges.
“Some patients living with these conditions experience joint subluxations or dislocations, or have frequent sprains and strains,” say event organizer Dr. Ranita Manocha, an Alberta Health Services’ (AHS) physiatrist and researcher at Foothills.
“Some patients live with chronic pain and fatigue. Some experience problems with their blood pressure, allergic reactions, gastrointestinal problems and anxiety.”
More than 30 people attended the event in person, while 40 more joined virtually on Zoom, with participants linking in from the United States, United Kingdom, Germany and Spain.
Cassidy Friesen, who’s been diagnosed with hypermobile Ehlers-Danlos Syndrome, attended the event and says she’s excited to learn about ongoing research. “I think the biggest value for me was just the recognition that this is a real disorder that has real symptoms.”
Friesen says her diagnosis came after 12 years of frustration and painful symptoms.
“I really started noticing things were sort of wrong when I was about 12. I was in competitively swimming and I was having repeated shoulder dislocations,” she recalls. “It just kept getting worse — and more symptoms started popping up. I would go to doctors and they'd be like, ‘Nothing's wrong. It all looks good.’”
Friesen shared word of the Hope for Hypermobility event with her family doctor. “He signed up for it and came, which was amazing! He took time out of his personal day on a Saturday to come and learn about it.”
The event also gave researchers from the University of Calgary and Mount Royal University the opportunity to hear directly from patients who shared their thoughts on future research priorities for the local team.
“Hypermobile spectrum disorders and the hypermobile Ehlers-Danlos Syndrome can cause significant functional impact,” says Dr. Manocha. “This was a great opportunity for researchers to learn from patients about this poorly understood condition.”
The event proved a win-win for researchers, clinicians, patients and family members — many of whom reported that they had struggled for years with painful symptoms before being diagnosed.
To better care for these patients, Dr. Manocha has started a Connective Tissue Disorders Rehabilitation Clinic at Foothills Medical Centre and adds she’d like to hold future events to connect patients with researchers to share their hope for new treatments for the disease.
Learn more about better mobility and Dr. Manocha’s research lab here.
