The career of an NHL prospect has been cut short after an Ehlers-Danlos Syndrome (EDS) diagnosis.
Chaz Lucius, a former first-round draft pick of the Winnipeg Jets, announced on Tuesday he was retiring from professional hockey after he was diagnosed with the rare condition.
“As I struggled with incurring and recovering from various joint injuries over the past several years, I had thought I was just unlucky. With the diagnosis of EDS, I now realize that my body impacted by EDS could not handle the physical nature of playing hockey,” Lucius said in a statement on social media.
But what is EDS?
Dr. Nimish Mittal, a physiatrist at the University Health Network in Toronto and the medical director of the GoodHope Ehlers-Danlos Syndrome Clinic, said EDS is a group of genetic conditions that affect connective tissue in the human body.
There are 13 types of EDS and they can all impact people in different ways.
“EDS mostly happens because of a mutation in our DNA that results in a malformation of either a certain type of collagen or the proteins which bind that collagen and because of that, our connective tissue is fragile,” said Mittal.
“Connective tissue is composed of our joints, ligaments, tendons, vessels around the blood, our soft tissue, organs, internal organs and so on. Now different types of EDS manifest depending on the mutation a person might have, and depending on that mutation, the severity, in terms of threat to life, is manifested.”
Mittal said EDS is hereditary, and the most common form is called Hypermobile EDS, which can affect one in every 2,000 to 5,000 people.
The most life-threatening form is called Vascular Ehlers-Danlos Syndrome, Mittal said, and its prevalence is one in every 100,000 people.
“Vascular Ehlers-Danlos is especially life-threatening because it affects the arteries around the heart. You’re born with a condition you don’t know about and if you engage in some high-impact activity, because the vessels are brittle, they just rupture and it becomes a life-threatening emergency.”
While Mittal isn’t familiar with Lucius’ specific diagnosis, he said when someone with EDS is injured, their body heals differently than someone who doesn’t have it.
He said their range of motion is abnormal and this can cause injuries to be worse and take longer to heal.
“An abnormal range of motion, which predisposes them to repetitive strains and sprains and instability because their joints are not holding proper. And when these joints don’t hold properly, they can suffer repetitive, as I said, strains and sprains. Now, since they also have this connective tissue injury, their healing is delayed.”
He noted the repetitive injury can also affect the nerves, which leads to chronic pain.
Diagnosis and quality of life
Depending on the type of EDS, Mittal said the average time to be diagnosed is between 10 and 16 years, but noted some of the rare types can present with physical features in infancy and early childhood.
“The journey to diagnosis can be quite complex because there’s not a lot of awareness about this disease.”
Mittal said there is no cure for EDS and treatment is usually multidisciplinary, ranging from exercise and rehabilitation and dietary work to treatment from specialists, like a cardiologist or respirologist.
“One thing which definitely happens is people who have EDS get early arthritis because the joints are unstable.”
For the most common type of EDS – hypermobile – Mittal said life expectancy is considered normal compared to someone without EDS.
“This disease needs a lot of awareness. Not a lot of people are aware about it.”
Mittal noted Toronto will be hosting the International Symposium for Ehlers-Danlos Syndrome in September, and people can participate virtually or in person.
