Chaz Lucius, the former USA Hockey and current Winnipeg Jets prospect, has retired from hockey at the age of 20. He came to this tough decision at the very young age of 21. His retirement is due to a diagnosis of Ehlers-Danlos syndrome (EDS), a rare connective tissue disorder. This debilitating disorder breaks down the essential connective proteins that keep joints, tissues and organs intact. Consequently, those directly impacted experience a host of burdens.
EDS is unique due to the sheer number of types (many of which are rare). Of these, hypermobile EDS is the most common variant and the least understood. It seems to be passed down through families, but scientists have so far been unable to pinpoint the particular gene that causes this disorder. In addition, there is not yet a blood or DNA test that can definitively provide a diagnosis of hypermobile EDS. Instead, healthcare professionals use a long and detailed checklist that looks at a multitude of factors to make a proper diagnosis.
The Diagnostic Process
In order to diagnose Ehlers-Danlos syndrome, medical professionals use a detailed checklist specifically created to evaluate an array of symptoms at once. You’ll assess for abnormal scar formation, striae distensae, and hernias. You’ll be screening for chronic joint pain and joint dislocations. These elements together help paint a detailed picture of that person’s health picture.
Dr. Bernie Chodirker, an expert in the field, notes that “for the patients who are severely affected, this can be quite a difficult disorder to treat.” He emphasizes that “symptoms can be quite debilitating and difficult to manage,” highlighting the complexity of living with EDS.
In Lucius’s case, the demands of playing hockey made the situation worse. He stated, “With this diagnosis of EDS, I now realize that my body impacted by EDS could not handle the physical nature of playing hockey.” Such recognition is a testament to the difficult position athletes can be when living with chronic medical conditions.
Living with Ehlers-Danlos Syndrome
People living with EDS are fatigued and challenged by different modulations of their condition daily. While others might only experience slight pain that is easily handled by an everyday painkiller such as Tylenol, other individuals experience debilitating forms. Tammy Stadt is a passionate advocate for people living with EDS. She focused on the unpredictability of the condition, stating, “Every day, it’s something new.”
In more severe cases, people with the disease can encounter life-threatening complications. These can entail anything from major organ rupture, a hallmark of one of the rarer forms of EDS. Stadt poignantly described her own experiences: “I went to wash my lower back in the shower and popped two discs and caused a bleed around my own spinal cord.” Her testimony highlights the physical toll that EDS can take on everyday activities.
The Impacts of Ehlers-Danlos Syndrome
The impact of Ehlers-Danlos syndrome goes beyond the physical. Its effects include emotional and social tolls. Every athlete, such as Lucius, hopes of one day competing at the highest level. All too often, health problems bring an abrupt end to that dream. Lucius has chosen to retire, proof of his wonderful self-awareness of his own limitations. His decision brings crucial attention to a condition that’s largely invisible.
“People with EDS got the cheap dollar store glue, and everybody else got the crazy glue,” Stadt remarked, effectively illustrating how individuals with EDS may feel compared to those without such conditions. The specific challenges they experience can make them feel like no one else understands their struggles or experiences.
