Ehlers-Danlos Syndromes (EDS)

April 2022

What is Ehlers-Danlos Syndromes (EDS)?

EDS are a group of genetic connective tissue disorders caused by issues in the structure, production, and/or processing of collagen. Collagen is what gives connective tissue its strength, and when its not being produced correctly it can cause issues. EDS affects the connective tissues of the body. These are the tissues that hold together our joints, muscles, blood vessels and internal organs.

Multiple types of EDS exist, some are extremely rare and not well understood. The syndromes vary in how they affect the body. Some people may have mildly loose joints, while others can have to life-threatening complications. Many different areas of the body can be affected.

Symptoms can be different depending on the person and the part of the body. But, can include:

Joint hypermobility - where joints move further than their normal range
Joint instability - where the joints surfaces can separate and cause a lot of pain and discomfort
Dislocations - where a full separation of the surface of a joint occurs
Very soft skin that is highly elastic and stretchy
Skin that can bruise very easily
Abnormal scarring
Slow wound healing
In some cases, EDS can cause weak tissues in specific groups, for example in the mouth or eyes.

What causes it?

The disorders of EDS are associated with some genetic mutations. This affects how the body makes collagen and can lead to connective tissues becoming weaker.

How is it diagnosed?

EDS can be diagnosed by visiting your GP where they will do a medical history and physical exam. The GP will test the skin elasticity and joint flexibility. Imaging tests can look for other signs and complications of EDS. A blood sample may be taken for genetic testing, which helps confirm the diagnosis.

What can I do to manage EDS?

There is currently no cure for Ehlers-Danlos Syndromes. Treatment and management aims to prevent complications and to relieve symptoms.

Talk to your doctor about medicines - some medicines may help with problems with joints and muscle pain.
Look into using assistive devices - these can include wheelchairs, scooters, and braces.
Talk with an exercise professional - they can prescribe exercises to strengthen muscles to support unstable joints. It is important to always speak with your GP before starting new exercises.
Acknowledge your feelings and seek support - It is natural to feel scared, frustrated, sad and sometimes angry. Be aware of these feelings and get help if they start affecting your daily life.
Surgery - in some cases surgery may be discussed to help repair joints damaged by repeated dislocations.
Self Care - work with your GP to make a treatment plan for health and longevity. Practising self-care may include
- avoiding contact sports, heavy lifting, injuries and falls,
- cleansing the skin with mild soaps and using sunscreen when outdoors
- practising meditation and other stress-reliving exercises like tai chi (or modified yoga).

Our friends at Arthritis & Osteoporisis Western Australia have a great story and article on EDS here

Source:

The Ehlers-Danlos Society. What are the Ehlers-Danlos syndromes?. n.d. https://www.ehlers-danlos.com/what-is-eds/

National Center for Advancing Translational Sciences. Genetic and Rare Diseases Information Center. Ehlers-Danlos Syndromes. 2017. https://rarediseases.info.nih.gov/diseases/6322/ehlers-danlos-syndromes

Arthritis Foundation. Ehlers-Danlos Syndrome. n.d. https://bit.ly/3OroxeE

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