Ehlers-Danlos Syndromes (EDS)

EDS
Posted May 28, 2021
Jennifer Stemmler
Physiotherapist
BSc(Kin), MSc(PT)

May is an exciting month! Not only is this National Physiotherapy Month, but it is also Ehlers-Danlos Syndromes (EDS) Awareness Month! This is a great opportunity to bring awareness to what this group of conditions is, and how physiotherapy can be an important tool in helping people manage this complex diagnosis.

Ehlers-Danlos Syndromes (EDS) are a group of hereditary conditions that impact the connective tissue in the body. Our connective tissue is so important – it’s what holds together our skin, our ligaments, our blood vessels, and even our organs and bones. This can result in widespread symptoms affecting various systems in the body (1).

The most common symptoms individuals report are:

  • joint hypermobility, or excessive movement in the joints
  • skin hyperextensibility, or skin that stretches further than normal
  • widespread, ongoing pain

However, there are many lesser known symptoms related to these conditions, including:

  • delayed healing
  • structural weakness such as organ prolapse or hernias
  • fragile blood vessels
  • generalized weakness and exercise intolerance
  • autonomic disorders leading to fatigue and dizziness
  • depression/anxiety

Individuals with EDS often are at risk for joint instability or dislocation, which over time can cause a lot of damage to the joints and be quite painful. They also tend to be less active due to a limited capacity for aerobic exercise and a fear of injury, resulting in strength and balance deficits.(1).

Because of the complexity of these conditions, physiotherapists play a significant role in managing symptoms related to EDS (1, 2) . As exercise specialists, our biggest goal is to get each individual moving in a way that is realistic, enjoyable, and, most importantly, safe. Advice from a physiotherapist has been shown to change exercise behaviour for those with EDS by improving participation in exercise and decreasing fear of injury (2, 3) . Some physiotherapy treatment options include (1, 2, 3):

  • Education about pain and the nervous system, joint protection, and gradual progressive exposure to activity
  • Aerobic, strengthening, and balance exercises based on each individual’s symptoms and capabilities, and focusing on safety
  • Goal setting to address each individual’s interests and needs
  • Development of a “flare up plan” to help empower each individual to manage their own symptoms independently
  • Pain management strategies, including therapeutic modalities (heat, ice, acupuncture), manual therapy, and relaxation/mindfulness techniques
  • Splints, bracing, and education on mobility aids if indicated

Please feel free to reach out if you feel you could benefit from physiotherapy to help with your symptoms related to EDS!

_____________________________________________________

References

1. Engelbert, R.H.H., Juul-Kristensen, B., Pacey, V., De Wandele, I., Smeenk, S., Woinarosky, N…Simmonds, J.V. (2017). The evidence-based rationale for physical therapy treatment of children, adolescents, and adults diagnosed with Joint Hypermobility Syndrome/Hypermobile Ehlers-Danlos Syndrome. American Journal of Medical Genetics Part C, 175(1). 158-167. http://doi: 10.1002/ajmg.c.31545

2. Song, B., Yeh, P., Nguyen, D., Ikpeama, U., Epstein, M., & Harrell, J. (2020) Ehlers-Danlos Syndrome: An analysis of the current treatment options. Pain Physician, 23(4). 429-438. https://pubmed.ncbi.nlm.nih.gov/32709178/

3. Simmonds, J.V., Herbland, A., Hakim, A., Ninis, N., Lever, W., Aziz, Q., & Cairns, M. (2019). Exercise beliefs and behaviours of individuals with Joint Hypermobility Syndrome/Ehlers-Danlos syndrome – hypermobility type. Disability & Rehabilitation, 41(4). 445-455. http://doi: 10.1080/09638288.2017.1398278.