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Ehlers Danlos Syndrome (EDS) and Hypermobility Syndrome Disorders (HSD)

As someone who has diagnosed hypermobility syndrome disorder, I’ve personally experienced first hand how hypermobility can impact your daily routine, life, and work. I’m blessed that I decided to choose occupational therapy as my career as it has helped me learn how to manage my own symptoms. So trust me when I say, OT can be highly beneficial for those with Hypermobility Syndrome Disorders or Ehlers Danlos Syndrome.

What is Ehlers Danlos Syndrome (EDS)?

Ehlers-Danlos Syndrome (EDS) is a group of genetic disorders that primarily affect the connective tissues, which provide structure and support to the skin, joints, blood vessels, and other organs and tissues. Connective tissues are made up of collagen, a protein that gives structure and strength to tissues. In EDS, the collagen is often defective or deficient, leading to a wide range of symptoms.

Key Characteristics of EDS:

  1. Hypermobile Joints:

    • Individuals with EDS often have joints that move beyond the normal range of motion, making them highly flexible or "double-jointed." This hypermobility can lead to joint dislocations, sprains, and chronic pain.

  2. Skin Elasticity:

    • The skin of people with EDS can be unusually stretchy, soft, and fragile. It may bruise easily, and wounds can take longer to heal. In some types of EDS, the skin may also have a velvety texture.

  3. Fragile Tissues:

    • Blood vessels, internal organs, and other tissues can be more fragile and prone to damage. In some forms of EDS, there is an increased risk of serious complications, such as the rupture of blood vessels or organs.

Beighton Scoring System for Ehlers Danlos Syndrome

How does OT help with Ehlers Danlos Syndrome or Hypermobility Syndrome Disorders?

1. Joint Stability

  • Strengthening Muscles: Occupational therapy focuses on strengthening the muscles around joints, which can help compensate for the weakness in connective tissues, thereby improving joint stability.

  • Proprioception Training: Exercises that enhance proprioception (awareness of joint position) can help individuals better control their movements, reducing the risk of dislocations and subluxations.

2. Pain Management

  • Targeted Exercises: Specific exercises can help reduce muscle tension and improve blood circulation, which may alleviate pain.

  • Manual Therapy: Techniques such as soft tissue massage and joint mobilization can relieve muscle tension and improve joint function, helping to manage pain.

3. Improved Mobility and Flexibility

  • Customized Stretching Programs: Occupational therapy can design safe stretching programs that enhance flexibility without overextending joints, which is crucial for individuals with EDS.

  • Movement Education: Educating patients on proper movement techniques can help them avoid movements that could cause injury or pain.

4. Prevention of Injuries

  • Posture and Body Mechanics: Occupational therapy can teach proper posture and body mechanics to minimize stress on joints, reducing the risk of injury during daily activities.

  • Safe Exercise Routines: Developing exercise routines that are safe and tailored to the individual’s abilities can help maintain physical health without exacerbating EDS symptoms.

5. Enhanced Quality of Life

  • Increased Independence: By improving strength, stability, and mobility, occupational therapy can enhance an individual's ability to perform daily activities independently.

  • Mental Health Support: Physical activity and achieving physical goals can positively impact mental health, reducing anxiety and depression often associated with chronic conditions like EDS.

6. Long-term Management

  • Chronic Condition Management: Occupational therapy provides tools and strategies for long-term management of EDS, helping patients maintain function and quality of life as they age.

  • Education and Self-management: Patients learn how to manage their condition on their own, including knowing when to rest, how to modify activities, and how to continue exercises at home.

Occupational therapy plays a crucial role in managing Ehlers-Danlos Syndrome by improving joint stability, reducing pain, preventing injuries, and enhancing overall quality of life. The therapy is tailored to the individual’s specific needs and capabilities, making it an essential component of a comprehensive care plan for those with EDS.

Ehlers Danlos Syndrome (EDS) and Occupational Therapy