The City of Mount Pearl has declared May as Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month. From left to right are councillors Chelsea Lane, Isabelle Fry, Jim Locke, Mayor Dave Aker, Newfoundland and Labrador EDS awareness committee member Jean Janes, councillors Mark Rice, and Bill Antle. Joining remotely was Deputy Mayor Nicole Kieley. Mark Squibb photo
By Mark Squibb
The City of Mount Pearl has proclaimed the month of May as Ehlers-Danlos Syndromes (EDS) and Hypermobility Spectrum Disorders (HSD) Awareness Month.
EDS are a group of 13 heritable disorders that affect the body’s connective tissues including the skin, joints, blood vessels, digestive system, and other organs and tissues. EDS is categorized by looseness, instability, and dislocations of the joints, fragile and often hyper-elastic skin that bruises, scars, and tears easily, unpredictable arterial and organ rupture causing acute pain, excessive internal bleeding, shock, stroke, and premature death.
Folks can be diagnosed with HSD when joint problems, such as ease of injury, pain, and dislocations, arise in a person who does not have the defining features of EDS or another connective tissue disorder.
Both are frequently misdiagnosed or underdiagnosed.
“One of the greatest challenges people with EDS and HSD face is being misunderstood or overlooked, even by members of the medical system,” said Jean Janes, a member of the Newfoundland and Labrador EDS awareness committee. “Diagnosis often takes years, sometimes decades, and during that time, individuals may experience worsening symptoms, mental health struggles, and a deep sense of isolation. That’s why awareness matters.”
Janes said her daughter, who has been diagnosed with EDS, has had 42 surgeries in the last 20 years.
“She’s coming apart at the seams,” said Janes. “But at least she’s been diagnosed and knows that all the different things that are happening are not just in her head.”
Janes said someone with EDS could dislocate a shoulder simply rolling over in bed.
Members of council – many of whom said they had either never heard of EDS or HSD or were very unfamiliar with it – applauded Janes for her efforts to raise awareness of the disorders.
“It’s important to educate people when it comes to invisible disabilities, because if you can’t label it, and you don’t know what’s happening, then you feel like it’s all in your mind and you’re not as normal as everybody else,” said councillor Isabelle Fry. “You have no idea the number of people you’re going to help by making people aware of it.”
