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

The professional hockey career of Chaz Lucius, a first-round Winnipeg Jets draft pick, came to an abrupt end due to an incurable medical condition known as Ehlers-Danlos syndrome (EDS). This disorder, which affects the body’s connective tissue by causing abnormalities in the proteins that hold joints, tissues, and organs together, can be challenging to diagnose and treat, according to experts.

Dr. Bernie Chodirker, a medical geneticist at Shared Health in Manitoba, explained that EDS can manifest in various ways, with some individuals experiencing minimal symptoms that can be managed with painkillers, while others may face more severe symptoms such as recurrent dislocations, chronic pain, and fatigue. Hypermobile EDS, the most common type of the condition, is characterized by joint hypermobility, joint instability, and chronic pain. However, there is no specific blood or DNA test to confirm a diagnosis, making it reliant on an extensive checklist of criteria.

Individuals living with EDS, like Tammy Stadt, who was diagnosed with hypermobile EDS at 27, face a daily struggle with unpredictable symptoms and increased susceptibility to injuries. Stadt, now the director of education and wellness at the EDS Canada Foundation, emphasized the importance of early diagnosis to prevent long-term damage and disability. While there is no cure for EDS, there are ways to manage symptoms and improve quality of life, though the lack of understanding among medical practitioners can lead to misdiagnosis.

In light of Lucius’s retirement from professional hockey due to EDS, Stadt commended his strength and perseverance in overcoming the challenges of living with the condition. She highlighted the need for increased awareness and education among healthcare providers to accurately diagnose and treat EDS. The EDS Canada Foundation is actively working to create a toolkit for physicians to improve their understanding of the disorder and provide better care for patients.

Overall, the story of Chaz Lucius sheds light on the complexities of living with EDS and the importance of early diagnosis and proper management. By raising awareness and enhancing medical knowledge, individuals with EDS can receive the support and treatment they need to lead fulfilling lives despite the challenges posed by the condition.