The incurable medical condition that put an end to the professional hockey career from a selection of the Winnipeg Jets first round is a disorder that is difficult to diagnose and, sometimes, difficult to treat, says a Manitoba doctor.
Chaz Lucius, who signed a three-year contract with the Jets in 2022 and began his professional career playing with Manitoba Moose in the 2022-23 season, announced Tuesday that he retired from the professional hockey after being recently diagnosed with Ehlers-Danlos syndrome.
The condition, also known as EDS, affects the connective tissue of the body by causing an abnormality in proteins that maintain joints, tissues and organs.
“The people with EDS got the cheap dollar store glue, and everyone else obtained the crazy glue” to keep the joints together, says Tammy Stadt, who lives with the condition.
“So, because we have cheap glue, our joints do not stay correctly.”
People who live with the most common EDS type can have minimal symptoms that can be relieved with analgesics such as Tylenol, said Dr. Bernie Chodirker, a medical geneticist who is head of the Shared Health Genetics and Metabolism program, Manitoba Provincial Health Agency.
But “for patients who are severely affected, this can be a very difficult disorder to treat,” he said. “Symptoms can be quite weakening and difficult to handle,” including recurrent dislocations, chronic pain and fatigue.
There are different forms of the condition and most are quite rare, but a guy, called Eds hypermobile, is the most common.
It causes joint hypermobility, which means that the joints extend more than normal, and joint instability, together with chronic pain.
Hypermobile EDS seem to be a hereditary condition, but researchers have not yet found the gene that causes it, said Chodirker, which means that there is no specific blood or DNA test that can confirm a diagnosis.
A diagnosis of EDS is based on an extensive verification list with strict criteria, looking for a combination of factors such as abnormal scars, stretch marks or hernias, while taking into account the pain of chronic joints or joint dislocations.
More rare forms of EDS can be diagnosed through a genetic test, Chodirker said, but there are generally other symptoms that suggest the condition, including the rupture of the main organs.
In his statement, Lucius did not specify what type of EDS suffers, but said he has had problems incurred and recovering from several joint injuries in recent years.
“I thought I only had bad luck,” Lucius said. “With this diagnosis of EDS, I now realize that my body hit by EDS could not handle the physical nature of playing hockey.”
‘Every day, it’s something new’
Stadt was diagnosed with Hypermobile EDS at the age of 27, after he was taking a long time for a long time to heal from a car accident. She is now working as director of Education and Welfare at the Eds Canada Foundation.
“Every day, it’s something new,” for people living with EDS, he said. “In good morning, we can do everything we would normally do.”
But people with the condition are also more prone to injuries, which may include dislocations, earlier start of arthritis and muscle fatigue.
Stadt was temporarily paralyzed after waking up with a herniated neck disc, and once he passed out of pain after suffering a dislocated joint, both incidents connected to their hypermobile eds.
In another case, “I went to wash my back in the shower and two albums appeared and caused bleeding around my own spinal cord,” he said.
In the time he took surgery due to that back injury, he suffered permanent nervous damage that affected his legs.
“I’m using [a] Wheel chair 90 percent of the time. I didn’t expect to be disabled at 42, “he said.
Speaking in the case of Lucius, Stadt said it is a testimony of the player’s strength.
“Being able to get to the NHL and play that hockey level shows the discipline to overcome the challenges of living with the EDS.”
Obtaining a diagnosis of EDS Hypermobile before in life, as Lucius, 21, often is a challenge, but can help people take preventive measures to avoid damage such as dislocations, Stadt said.
While there is no cure for EDS, there are ways to control symptoms and improve the quality of life, he said.
But there is a general lack of understanding of disorder among doctors, which can lead to a wrong diagnosis.
The Eds Canada Foundation has been working to create a set of tools for doctors with information and resources on how to deal with the condition.
With greater awareness that is raised, doctors “can finally connect all unrelated diagnoses” to accurately diagnose the EDS, he said, and patients “are now being treated versus being of a gas.”
