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Physiotherapy and Ehlers-Danlos Syndrome: An Essential Partnership

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Ehlers-Danlos Syndrome (EDS) is a group of connective tissue disorders that can significantly impact an individual's mobility and overall physical function. Physiotherapy plays a crucial role in managing EDS, focusing on improving joint stability, reducing pain, and enhancing quality of life. Read on to explore the various types of EDS, their symptoms, and how targeted physiotherapy interventions can make a difference.


Understanding Ehlers-Danlos Syndrome

EDS comprises a collection of genetic disorders that affect connective tissues, primarily collagen. Collagen is a protein which provides structural support and strength to the skin, muscles, bones and connective tissue. There are thirteen major types of EDS, with the most common being: 

  1. Hypermobile EDS (hEDS): Characterized by generalized joint hypermobility and mild skin involvement.

  2. Classical EDS (cEDS): Marked by skin hyperextensibility and atrophic scarring.

  3. Vascular EDS (vEDS): A severe form affecting blood vessels, intestines, and uterus, leading to a high risk of rupture.

 

EDS symptoms can vary widely and depend on the specific type. Common features include: 

  • Joint Hypermobility: Joints that move beyond the normal range of motion, causing frequent dislocations and joint pain.

  • Skin Hyperextensibility: Skin that can be stretched more than usual, often soft and velvety.

  • Tissue Fragility: Easy bruising, slow wound healing, and the tendency to develop wide, thin scars.

 

Physiotherapy for Ehlers-Danlos Syndrome


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While there is no cure for EDS, a physiotherapist with advanced knowledge in treating EDS, hypermobility and chronic pain is vital in managing its symptoms and allowing individuals to partake in all their meaningful activities. A thorough initial assessment is first required to determine an individual's specific symptoms and impact on their life. A variety of treatment approaches are available and will depend on assessment findings. Treatment can include:

 

1. Joint Stabilization

Joint hypermobility is a hallmark of EDS, leading to frequent dislocations and instability. Physiotherapists focus on strengthening exercises aimed at targeting the muscles around hypermobile joints to enhance stability and reduce the risk of dislocations. Proprioceptive training is also frequently included to improv the body's ability to sense joint position, which helps in preventing injuries. These would include things like balance and stability exercises. Splinting can also be considered to provide external support to hypermobile joints and promote adequate joint and muscle positioning to maximize function. Custom made or pre-fabricated orthoses (splints) can be made in clinic to meet your specific needs.

 

2. Pain Management

Chronic pain is common in individuals with EDS. Physiotherapy interventions targeted toward pain management often include manual therapy techniques such as soft tissue release to relieve muscle tension and improve circulation. Other pain relief techniques that can be considered are modalities like heat, cold, and TENS (Transcutaneous Electrical Nerve Stimulation) as well as more advanced techniques like acupuncture and dry needling. Passive techniques are rarely enough to provide lasting results therefore a targeted active exercise program is always needed to maintain gains.

 

3. Improving Mobility and Function

Physiotherapists develop personalized strengthening and proprioception exercise programs to maintain and improve mobility. Whether performed in clinic or as a home program, these exercises are key to keeping your body strong and healthy. Programs often include a mix of range of motion exercises to maintain joint flexibility without overstretching (which is very common in individuals with EDS) as well as functional training which aims at applying joint protection techniques and healthy biomechanics to your everyday life.

 

4. Education and Self-Management

Education is power. Your physiotherapist will educate you on your conditions and the causes of your symptoms. With a better understanding of the underlying changes in your body, it will be easier for you to adapt your daily activities to meet your needs. Self-management techniques will allow you to maintain gains made during the course of treatment and live your life to the fullest without needing to constantly seek therapy. Each individual with EDS presents unique challenges, requiring a tailored approach.  Your physiotherapist will work closely with you to set realistic goals and monitor your progress.

 




Physiotherapy is an essential component in the management of Ehlers-Danlos Syndrome and other hypermobility conditions. By focusing on joint stabilization, pain management, and functional improvement, physiotherapy will play a crucial role in helping individuals with EDS lead healthier, more active lives.


For more information or to see how we can help you specifically, contact us and we will start the journey to get you back to what matters.

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