Ehlers Danlos Syndromes (EDS)

Ehlers-Danlos Syndromes are a group of inherited connective tissue disorders that are generally characterized by joint hypermobility, skin hyperextensibility (skin that can be stretched further than normal), and tissue fragility.

Hypermobility Spectrum Disorder is usually diagnosed after a diagnosis or EDS has been excluded, but it can present with equal severity to hypermobile EDS (hEDS).

Hypermobility means that the joints move beyond the normal range. This can result in joint pain. In EDS, joints can be unstable and prone to dislocations and/or subluxations.

Assessing hypermobility needs to be done by a qualified health professional, but the basic information can be found here https://www.ehlers-danlos.com/assessing-joint-hypermobility/

Hypermobility can occur as a stand–alone condition without EDS. It may be less severe and result in joint pain, but not dislocations. It can co-occur with other conditions such as Autism Spectrum Disorder (ASD) or Attention Deficit Hyperactivity Disorder (ADHD).

Hypermobility and EDS are conditions which are very frequently poorly understood and poorly managed. We are very interested in EDS and hypermobility at Bodyfit Physio. In 2020 we are completing a comprehensive course on the management of EDS and hypermobility through Project ECHO which is organised by the Ehlers-Danlos Society. The Ehlers-Danlos Society website has a huge amount of useful information if you would like to read more https://www.ehlers-danlos.com/

Issues that some people with EDS / HSD / Hypermobility might want to address with physio include:

Pain management
Joint protection strategies
Joint awareness
Strength
- Core strength
- Specific strength
- Strength needed for functional / exercise / sports goals

Physiotherapy approaches that our clients with EDS / HSD / Hypermobility find useful:

Pilates
- We love Pilates as a therapeutic medium
- We will design a specific program for you
- Choice between ongoing individual sessions or joining a small group
- Work on
  - Joint position awareness
  - Joint protection strategies
  - Core strength and specific strength
  - Specific skills training / preparation
  - Movement control
  - Building functional capacity towards specific goals
Hands on treatment
- Can be very useful for dealing with muscle tension and muscle pain
Home management strategies
- Joint position awareness
- Joint protection strategies
- Exercise to build core and specific strength
Working towards joining into activity in the community, social learning or exercise-based activities

It is not common for the NDIS to fund physiotherapy services for people who have Ehlers-danlos Syndrome (EDS) or Hypermobility Spectrum Disorder (HSD). At Bodyfit Physio we would like to increase awareness of EDS and HDS. We would love to see Ehlers-danlos as a commonly funded condition under the NDIS. Other sources of funding to assist with the provision of physio can include Private Health Insurance or Medicare, under a GP Management Plan (previously known as EPC).