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The incurable medical condition that ended the first round of Winnipeg Jets draft picks in the professional hockey career is a disease that is challenging to diagnose and sometimes difficult to treat.
Chaz Lucius, who signed a three-year contract with the Jets in 2022 and began his career with Manitoba Moose in the 2022-23 season, announced Tuesday that he had recently retired from professional hockey after being diagnosed with Ehlers-Danlos syndrome.
The disease, also known as EDS, affects the body’s connective tissue by causing abnormalities in proteins that put joints, tissues, and organs together.
“People with ED get cheap dollar store glue and everyone else puts the joints together,” said Tammy Stadt, who lives in this situation.
“So, because we get cheap glue, our joints can’t hold properly.”
Dr. Bernie Chodirker, head of genetics and metabolic programs at Manitoba Health, a provincial health agency in Manitoba, said people with more common ED types may experience the smallest symptoms, such as painkillers like Tylenol.
But, “For patients who are severely affected, this can be a difficult condition to treat,” he said. “Symptoms can be very debilitating and difficult to manage”, including recurrent dislocation, chronic pain and fatigue.
This situation has different forms, most of which are rare, but a type called HyperMobile EDS is more common.
It causes excessive joint movement – meaning the joint extends to a larger level than normal – as well as joint instability and chronic pain.
HyperMobile EDS appears to be a genetic condition, but researchers have not found the gene that causes the disease, meaning there is no specific blood or DNA test to confirm the diagnosis, Chodirker said.
The diagnosis of EDS relies on an extensive list of strict standards, examining the combination of factors such as abnormal scarring, stretch marks, or hernia, while also considering chronic joint pain or joint dislocation.
Chodirker said that genetic testing can be used to diagnose more rare forms of ED, but there are often other symptoms that suggest the disease, including major organ rupture.
Lucius did not specify the type of ED he suffered in his statement, but he said he has struggled and recovered from various joint injuries over the past few years.
“I thought I was just unfortunate,” Lucius said. “Through the diagnosis of ED, I now realize that the body affected by ED cannot cope with the physical nature of hockey.”
“Every day, this is new”
Stadt was diagnosed with HyperMobile ED at the age of 27 because it took her a long time to recover from the car accident. She now serves as Director of Education and Health at the EDS Canada Foundation.
“Every day, it’s new,” she said. “On a good day, we can do everything we usually do.”
But people with this condition are also more susceptible to injury, which may include dislocation, early arthritis, and muscle fatigue.
Stat woke up with a herniated neck disc and temporarily paralyzed and suffered pain from a joint dislocation, both of which were related to her hyperactive ED.
In another case, “I went to take a shower and went to wash my lower back, popped up two discs and bleed around my own spinal cord.”
While she underwent surgery for a back injury, she suffered permanent nerve damage that affected her legs.
“I’m using [a] Wheelchairs have 90% of the time. I didn’t expect to be disabled at the age of 42. ” she said.
Statt said of Lucius’ case that it proved the power of the player.
“Being able to get into the NHL and play at the level of hockey shows the discipline to overcome the challenges with ED.”
Like the 21-year-old Lucius, diagnosing hyperactive EDS with early diagnosis in life is often a challenge, but can help people take precautions to avoid causing damage, such as dislocation, Stadt said.
While there is no cure for ED, there are ways to manage symptoms and improve quality of life, she said.
However, overall lack of knowledge about the disease among doctors can lead to misdiagnosis.
The EDS Canada Foundation has been working to create a toolkit for doctors and provide information and resources on how to treat the condition.
With higher awareness, doctors “eventually were able to connect all unrelated diagnoses to accurately diagnose EDS, and patients “are now being treated with refueling.”
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