Performing with Ehlers Danlo Syndrome

Performing with Ehlers-Danlos Syndrome (EDS) presents a unique blend of challenges and opportunities. EDS, a group of genetic connective tissue disorders, often manifests through hypermobility, skin that stretches easily, and a predisposition to bruising and injuries. Tthe hypermobility associated with EDS can enhance their flexibility and range of motion, often becoming a distinctive feature of their artistry.

However, this condition also requires performers to navigate the complexities of managing chronic pain, frequent joint dislocations, and the need for prolonged recovery periods. Balancing the demands of rigorous training and performances with the necessity of careful injury prevention and recovery strategies becomes essential. Understanding one’s body, working closely with healthcare professionals, and adopting tailored approaches to training and performance are crucial for thriving in the performing arts while living with EDS.

What is EDS?

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders characterized by hypermobility of the joints, skin that can be stretched easily and is unusually elastic, and a tendency for tissues to bruise or tear easily. People with EDS often have fragile skin that can lead to severe bruising and injuries, as well as other symptoms like chronic pain, dislocations, and issues with internal organs due to the lack of collagen or the presence of abnormal collagen. There are several types of EDS, each with its own set of symptoms and severity.

Causes of EDS:

Ehlers-Danlos Syndrome (EDS) is caused by genetic mutations that affect the structure, production, or processing of collagen or proteins that interact with collagen. Collagen is a vital component of connective tissues in the body, providing strength and elasticity. Here are the primary causes:

Genetic Mutations: Mutations in various genes responsible for collagen production and processing, such as COL5A1, COL5A2, COL3A1, COL1A1, and COL1A2, can lead to different types of EDS.
Inherited Disorders: EDS is typically inherited in an autosomal dominant pattern, meaning a mutation in just one copy of the gene from either parent can cause the disorder. Some types of EDS can also be inherited in an autosomal recessive pattern, requiring mutations in both copies of the gene.
Spontaneous Mutations: In some cases, EDS can result from new mutations that occur spontaneously (de novo) without a family history of the disorder.

The specific type of EDS a person has depends on which gene is affected and how the mutation impacts collagen production and function.

Symptoms of EDS:

Ehlers-Danlos Syndrome (EDS) encompasses a range of symptoms that can vary widely depending on the specific type. However, common symptoms across many types include:

Joint Hypermobility: Unusually flexible joints that move beyond the normal range.
Skin Hyperextensibility: Skin can be stretched further than normal and return to original shape
Skin Fragility: Skin that bruises easily and may tear or scar more readily.
Chronic Pain: Persistent joint and muscle pain.
Joint Dislocations and Subluxations: Joints that dislocate or partially dislocate easily.
Delayed Wound Healing: Wounds that heal slowly and may form widened, atrophic scars.
Velvety or Doughy Skin Texture: Skin that feels unusually soft or dough-like.
Gastrointestinal Issues: Problems such as abdominal pain, constipation, or irritable bowel syndrome (IBS).
Cardiovascular Complications: Fragile blood vessels, aortic dilation, or mitral valve prolapse.
Fatigue: Extreme tiredness and reduced stamina.
Muscle Weakness: Reduced muscle strength and tone.

Specific types of EDS may have additional, distinct symptoms, such as vascular EDS, which is characterized by a higher risk of organ and vessel rupture. It’s important for individuals with EDS to receive a proper diagnosis and management plan from healthcare professionals familiar with the condition.

Common Performer’s with EDS:

Performers with Ehlers-Danlos Syndrome (EDS) are often found in disciplines that leverage their natural hypermobility and flexibility. These include:

Dancers: Especially those in ballet, contemporary, and other styles that require a high degree of flexibility and range of motion.
Circus Performers: Such as aerialists, contortionists, and acrobats, who utilize their hypermobility in their acts.
Gymnasts: Athletes who perform in artistic or rhythmic gymnastics, which demand extreme flexibility and strength.
Flow Artists: Including hoopers, poi spinners, and staff manipulators, who incorporate fluid, flexible movements in their performances.
Yoga Instructors: Those who teach and practice yoga, particularly styles that emphasize deep stretching and flexibility.

While EDS can provide some advantages in these fields, it also poses significant challenges and risks, making injury prevention and management crucial for these performers.

Rest & Recovery

Physical Therapy: Follow your therapist’s advice closely. They can tailor exercises to strengthen muscles around your joints, improve stability, and reduce the risk of future dislocations.
Strength Training: Focus on building strength in the muscles that support your joints. Low-impact exercises like swimming or Pilates can be effective and gentle on your joints.
Flexibility and Stability: While flexibility is a natural trait for many with EDS, balancing it with stability exercises is crucial. Controlled stretching and proprioceptive training can help.
Warm-Up and Cool-Down: Always warm up before your flow practice or dancing and cool down afterward. This helps prepare your muscles and joints for activity and reduces injury risk.
Joint Protection: Use supportive gear like knee braces or kinesiology tape as recommended by your therapist. These can provide extra stability during activities.
Pain Management: Listen to your body and rest when needed. Techniques like icing, compression, elevation, and gentle massage can help manage pain and swelling.
Hydration and Nutrition: Staying hydrated and maintaining a balanced diet supports overall health and joint function.
Mindful Movement: Pay close attention to your body mechanics and movements to avoid placing undue stress on your joints.
Rest and Recovery: Ensure you get adequate rest to allow your body to heal and recover between sessions.

Connecting with others who share your condition can also provide valuable insights and support. There are communities and forums for dancers and athletes with EDS where you can exchange tips and experiences.

Living and performing with Ehlers-Danlos Syndrome (EDS) is a testament to resilience and determination. While the condition poses unique challenges, it also highlights the strength and adaptability of performers who navigate their careers with creativity and perseverance. By embracing tailored training, injury prevention, and a supportive network, performers with EDS can continue to shine in their art, proving that passion and dedication can overcome even the most daunting obstacles. The journey may be complex, but it is a powerful story of courage and commitment to the craft.