Ehlers-Danlos Syndrome Ends Promising Hockey Career: What To Know About This Elusive Condition
Winnipeg, Manitoba – Ehlers-danlos syndrome (EDS), the condition that recently forced Winnipeg Jets’ first-round draft pick Chaz Lucius into early retirement, presents meaningful diagnostic adn treatment challenges, according to medical experts. EDS, a group of inherited disorders affecting connective tissue, impacts joints, skin, and blood vessel walls.
What is Ehlers-Danlos Syndrome (EDS)?
EDS arises from abnormalities in the proteins responsible for holding the body’s structures together. Tammy Stadt, who lives with EDS and serves as the director of education and wellness at the EDS Canada Foundation, describes the condition as having “cheap dollar store glue” instead of “crazy glue” to hold joints together, leading to joint instability.
hypermobile EDS: The Most Common Type
While various forms of EDS exist, hypermobile EDS (hEDS) stands out as the most prevalent. This type is characterized by joint hypermobility (joints that stretch further than normal), joint instability, and chronic pain. Even though hEDS is believed to be inherited,the specific gene responsible remains unidentified,making diagnosis reliant on clinical evaluation.
Diagnosing Ehlers-Danlos Syndrome
Diagnosing EDS involves a complete assessment based on strict criteria, including evaluation of factors like abnormal scars, stretch marks, hernias, and a history of chronic joint pain or dislocations. More rare forms of EDS can be diagnosed through genetic testing, especially when accompanied by symptoms such as major organ rupture, says Dr. Bernie Chodirker, head of the genetics and metabolism program at Shared Health, Manitoba’s provincial health agency.
Impact on Daily Life
Dr. Chodirker notes that while some individuals with EDS experience mild symptoms manageable with over-the-counter pain relief, others face debilitating symptoms like recurrent dislocations, chronic pain, and fatigue. This was the case for Lucius who said “With this diagnosis of EDS, I now realize that my body impacted by EDS could not handle the physical nature of playing hockey.”
Stadt emphasizes the unpredictable nature of living with EDS: “Every day, it’s something new. On the good days, we can do everything that we would normally do.” However, individuals with EDS are also more susceptible to injuries, including dislocations, early-onset arthritis, and muscle fatigue.
Ehlers-Danlos Syndrome: NHL Player’s Success Highlights Challenges of Living with EDS
Winnipeg Jets forward Brad Lambert’s performance in the NHL shines a light on the every day struggles of living with Ehlers-Danlos Syndrome (EDS), a condition often misunderstood and misdiagnosed by medical professionals.
Navigating life with Hypermobile EDS: One Woman’s Story
Tammy Stadt,the director of education and wellness at the EDS Canada foundation,knows firsthand the impact of hypermobile EDS. She has experienced temporary paralysis from a herniated neck disc, blackouts due to joint dislocation, and permanent nerve damage following a spinal cord injury. These incidents, all linked to her EDS, have led to her using a wheelchair 90% of the time.
Early Diagnosis is Key, But Often a Challenge
Stadt highlights that receiving an early diagnosis of hypermobile EDS, as Lambert did at age 21, is crucial for taking preventative measures against injuries like dislocations. However, she points out that such diagnoses are frequently delayed due to a lack of understanding of EDS among medical professionals.
The Importance of Understanding and Management
While there is currently no cure for EDS, Stadt emphasizes that symptoms can be managed to improve quality of life. The EDS Canada Foundation is actively developing resources for physicians to improve diagnosis and treatment of the condition.
Player’s Success Demonstrates Strength
Stadt emphasizes that Lambert’s ability to compete in the NHL demonstrates unbelievable strength and discipline in overcoming the challenges of living with EDS.
What lifestyle adjustments and preventative measures can someone with hEDS take to minimize injury risk and manage symptoms in their daily life?
Ehlers-Danlos Syndrome: A Deep Dive into the Condition Impacting Athletes and everyday Life
This article explores Ehlers-Danlos Syndrome (EDS), its impact on athletes like Chaz Lucius and Brad Lambert, and the challenges faced by those living with it. Here’s a Q&A to provide further insights.
Ehlers-Danlos Syndrome (EDS) Q&A
- What exactly is Ehlers-Danlos Syndrome?
- EDS is a group of genetic disorders affecting connective tissues, which provide support and structure to skin, joints, and blood vessel walls.Think of it as having a “cheap glue” instead of “crazy glue” holding your body together, leading to instability.
- What are the main types of EDS?
- There are several types,but hypermobile EDS (hEDS) is the most common. Other types are often diagnosed thru genetic testing and can result in more severe symptoms.
- What are the symptoms of hypermobile EDS (hEDS)?
- Common symptoms include joint hypermobility (joints that stretch too far), joint instability, chronic pain, fatigue, and easy bruising. Some individuals experience dislocations, early-onset arthritis, and organ rupture.
- How is hEDS diagnosed?
- hEDS diagnosis relies on clinical evaluation based on specific criteria like joint hypermobility, skin abnormalities, and a history of joint pain or dislocations. Regrettably, there is currently no specific genetic test for hEDS.
- Why is early diagnosis important?
- Early diagnosis allows individuals to take preventative measures, such as lifestyle adjustments, physical therapy, and protective equipment, to minimize the risk of injuries like dislocations. It can also provide a pathway to managing symptoms and improving quality of life.
- Is there a cure for EDS?
- Currently, there is no cure for EDS. However, symptoms can be managed through a multidisciplinary approach, including physical therapy, pain management, and supportive care.
- How does EDS affect athletes like Chaz Lucius and Brad Lambert?
- The physical demands of sports can exacerbate EDS symptoms. Lucius’s body couldn’t handle the rigors of hockey, leading to early retirement. Lambert’s success in the NHL highlights his incredible resilience and discipline in managing the condition.
- What can someone do if they suspect they have EDS?
- Consult with a doctor and advocate for proper testing. Seek a doctor with experience in EDS to get an accurate diagnosis. Learning about EDS is key, as is finding support groups to connect with others.
- Where can I find more resources on EDS?
- Organizations such as the EDS Canada Foundation and the Ehlers-Danlos Society offer valuable data, support, and resources.
Understanding EDS is crucial for raising awareness, supporting those affected, and fostering better diagnosis and treatment.Learn more, and help champion the strength and resilience of those living with EDS!
