You’d be forgiven for saying that you’ve never heard of Ehlers-danlos syndrome (EDS).
It’s a rare condition affecting approximately 1 in 5,000 people globally.
May is EDS awareness month, an opportunity to raise awareness and show support to those living with EDS. At Valens Care, we work with several beautiful clients who live with EDS, so this cause is close to our hearts.
Ehlers-Danlos Syndrome is a group of genetic disorders affecting the body’s connective tissues (tissues supporting your skin, joints, and organs). Although there’s no cure, physiotherapy can help manage the symptoms.
Here we discuss Ehlers-Danlos Syndrome and how physiotherapy can help manage the condition.
What is Ehlers-Danlos Syndrome?
EDS is an inherited condition caused by defects in the genes that produce collagen.
Collagen is a protein that provides strength and stretch to your connective tissues. Defects cause the structural weaknesses and laxity which characterise EDS.
There are many types of EDS, the most common however is hypermobile EDS, which is estimated to represent 80-90% of EDS cases.
Symptoms of Ehlers-Danlos syndrome
Symptoms can vary from person to person, your experience will depend on which type of EDS you have. Each EDS disorder has its own characteristics.
However, the most common symptoms are:
- Joint Hypermobility- also known as loose joints. This means your joints have a larger range of motion than what’s considered normal. EDS can affect all joints in the body and can cause pain, instability, and in severe cases, dislocation
- Skin hyperextensibility- sometimes referred to as elastic, skin this means your skin can be stretched beyond the normal range often causing bruising, breaking, and scarring. Some people with EDS also experience loose skin or skin folds
- Fragile tissues- this leaves your organs and other structures vulnerable to damage
- Chronic pain – often those living with EDS complain of chronic pain in their joints, muscles, and bones
- Fatigue- muscle fatigue is common due to the extra effort required to stabilise loose joints.
As a result of these symptoms, many EDS clients experience a higher incidence of injury, poor balance, poor posture, and osteoarthritis.
Ehlers-Danlos Syndrome Treatment
Unfortunately, there is no cure for EDS, so treatments are aimed at managing symptoms and preventing complications.
Pain medication reduces the discomfort associated with the condition and avoidance of high-impact activities which place stress on the joints (i.e., contact sports) can reduce the risk of injury.
Physiotherapy for Ehlers-Danlos Syndrome
Physiotherapy can help to improve the quality of life of those living with EDS by minimising the symptoms and helping to maintain an active and healthy lifestyle.
At Valens Care, our physiotherapists are experienced in assessing and managing the condition.
Your physiotherapist will work with you to identify your strengths and weaknesses and create goals. Physiotherapy for EDS aims to:
- Increase strength and joint stability
- Improve balance and posture
- Reduce pain
- Reduce the risk of injury.
There are several techniques your physiotherapist may use to manage your EDS including:
- Training and exercise focused on strength, stability, posture, and balance
- Electrotherapy and ultrasound
- Splinting or bracing of your joints
- Education on pain management and joint protection
- Recommendations for equipment or environmental modifications.
The Valens Care Difference
Valens Care provides a more individualised kind of NDIS-funded mobile physiotherapy service, for people with complex care needs. We aim to help you achieve a more independent life.
Our physiotherapists tailor a treatment program specific to your condition, your needs, and your goals. We work with you long-term, continuously assessing your needs as your condition changes, and adjusting your treatment to help you maintain your physical function throughout your lifetime.
Contact us today to see how physiotherapy can help you manage your Ehlers-Danlos syndrome.
* All information is general and is not intended to be a substitute for professional medical advice. Valens Care can consult with you regarding your individual health needs.
Ehlers-Danlos Australia. (2020). What is Ehlers-Danlos Syndrome.
Healthdirect. (2021). Ehlers-Danlos Syndrome. www.healthdirect.gov.au/ehlers-danlos-syndrome
Tinkle, B, Castori, M, Berglund, B, Cohen, H, Grahame, R, Kazkaz, H, Levy,
- (2017). Hypermobile Ehlers–Danlos syndrome. American Journal of Medical Genetics 175C: 48– 69. doi.org/10.1002/ajmg.c.31538