Ehlers-Danlos syndrome forced a Winnipeg Jets draft pick to retire at 21. What is it?

The incurable medical condition that ended the professional hockey career of a first-round Winnipeg Jets draft pick is a disorder that’s challenging 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 the Manitoba Moose in the 2022-23 season, announced Tuesday he was retiring from professional hockey after recently being diagnosed with Ehlers-Danlos syndrome.

The condition, also known as EDS, affects the body’s connective tissue by causing an abnormality in the proteins that hold joints, tissues and organs together.

“People with EDS got the cheap dollar store glue, and everybody else got the crazy glue” to hold joints together, says Tammy Stadt, who lives with the condition.

“So because we got the cheap glue, our joints don’t stay in properly.”

People living with the more common type of EDS may have minimal symptoms that can be relieved with painkillers such as Tylenol, said Dr. Bernie Chodirker, a medical geneticist who is head of the genetics and metabolism program at Shared Health, Manitoba’s provincial health agency.

But “for the patients who are severely affected, this can be quite a difficult disorder to treat,” he said. “Symptoms can be quite debilitating and difficult to manage,” including recurrent dislocations, chronic pain and fatigue.

There are different forms of the condition and most are quite rare, but one type, called hypermobile EDS, is the more common.

It causes joint hypermobility — meaning joints stretch further than normal — and joint instability, along with chronic pain.

Hypermobile EDS appears to be an inherited condition, but researchers have yet to find the gene that causes it, Chodirker said — meaning there’s no specific blood or DNA test that can confirm a diagnosis.

An EDS diagnosis relies on an extensive checklist with strict criteria, looking into a combination of factors like abnormal scars, stretch marks or hernias, while also taking into account chronic joint pain or joint dislocations.

More rare forms of EDS can be diagnosed through a genetic test, Chodirker said, but there are usually other symptoms that suggest the condition, including major organ rupture.

In his statement, Lucius didn’t specify what type of EDS he suffers from, but said he has struggled with incurring and recovering from various joint injuries over the last several years. 

“I thought I was just unlucky,” Lucius said. “With this diagnosis of EDS, I now realize that my body impacted 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 she was taking an unusually long time to heal from a car crash. She now works as the director of education and wellness at the EDS Canada Foundation.

“Every day, it’s something new,” for people who live with EDS, she said. “On the good days, we can do everything that we would normally do.”

But people with the condition are also more prone to injury, which can include dislocations, earlier onset of arthritis and muscle fatigue.

Stadt was temporarily paralyzed after waking up with a herniated neck disc, and once blacked out from the pain after suffering a dislocated joint — both incidents connected to her hypermobile EDS.

In another instance, “I went to wash my lower back in the shower and popped two discs and caused a bleed around my own spinal cord,” she said. 

In the time it took her to get surgery for that back injury, she suffered from permanent nerve damage affecting her legs. 

“I’m using [a] wheelchair 90 per cent of the time. I didn’t expect to become disabled at 42,” she said. 

Speaking on Lucius’s case, Stadt said it is a testament to the player’s strength. 

“To be able to make it to the NHL and play that level of hockey shows the discipline to overcome the challenges of living with the EDS.” 

Getting a hypermobile EDS diagnosis earlier in life, like 21-year-old Lucius did, is often a challenge, but can help people take preventative steps to avoid damage like dislocations, said Stadt.

While there is no cure for EDS, there are ways of managing the symptoms and improving quality of life, she said.

But there’s an overall lack of understanding of the disorder among medical practitioners, which can lead to misdiagnosis.

The EDS Canada Foundation has been working to create a toolkit for physicians with information and resources on how to treat the condition.

With more awareness being raised, doctors are “able to finally connect all unrelated diagnoses” to accurately diagnose EDS, she said, and patients “are now being treated versus being gaslit.”