Ehlers-Danlos Syndrome and Hypomobility Spectrum Disorder Awareness Month
May is the month for shining a light on the relatively unknown and sometimes hidden health conditions, Ehlers-Danlos Syndrome and Hypomobility Spectrum Disorder.
Ehlers-Danlos Syndrome (EDS) refers to a group of 13 specific connective tissue disorders that are characterised by hypomobility in the body’s joints. Of the 13 subtypes of EDS, genetic testing can confirm a diagnosis of the condition in 12 of the group.
Hypomobility Spectrum Disorder (HSD) is the umbrella term that refers to the group of connective tissue conditions characterised by joint hypomobility.
UNDERSTANDING ELHERS-DANLOS SYNDROME
EDS can impact on the joints, muscles, tendons, blood vessels and skin and symptoms and presentation will vary depending on the subtype.
People with EDS often have very fragile skin that stretches and tears or bruises easily, and experience slow wound healing and severe scarring.
Joints can be loose or unstable and prone to frequent dislocations or subluxations (partial dislocation) and hyperextensible.
Among the 13 subtypes, sufferers can experience problems with their circulatory system (Vascular EDS), heart (Cardiac-Valvular EDS), hips (Arthrochalasia EDS), eyes (Brittle Cornea Syndrome) or muscles (Myopathic EDS), all of which can be diagnosed through molecular testing.
The diagnosis of hypermobile EDS (hEDS) – by far the most common subtype - remains clinical with no genetic cause yet identified. However, the criteria needed for a clinical diagnosis is extremely complex.
UNDERSTANDING HYPOMOBILITY SPECTRUM DISORDER
HSD ranges from asymptomatic joint hypermobility, where a person has no symptoms aside from their joints’ ability to move beyond normal limits, to hypermobile EDS. The essential difference lies in the stricter criteria for EDS compared to HSD.
Connective tissue acts as a framework to support and protect the body’s muscles and organs. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications.
HSD can affect both males and females of all racial and ethnic backgrounds and can manifest itself in a variety of different ways. It is estimated the combined prevalence of all types of Ehlers-Danlos syndrome appears to be at least 1 in 5,000 individuals worldwide.
TREATING EDS AND HSD
There is no specific treatment for Ehlers-Danlos Syndrome of Hypomobility Spectrum Disorder, instead a personalised program of interventions is designed based on an individuals’ presentation and assessment, and their own concerns.
A therapy-based Allied Health Team approach to manage the symptoms associated with EDS and HSD may include:
- Strengthening muscles around vulnerable joints
- Improving joint proprioception (the sensations of joint motion) and balance
- Falls prevention and mobility training
- Providing education related to fatigue management and activity pacing
- Graded exposure to cardiovascular exercise
- Pain management strategies
The team at Beyond Boundaries Rehab are doing our part in raising awareness of EDS and HEDS during May by sharing some of our favourite resources.
The Hypermobility Connect community is a helpful, hopeful and healthy place to learn and share life with hypermobility. Visit
The Ehlers-Danlos Society website contains a huge amount of information, including links to community resources and research into the syndrome.
My Bendy Body – Living With Hypermobility is a 26-page colour illustrated children’s book about living with hypermobility. This book is ideal for children with hypermobility conditions and their parents to share with important people in their lives.
If you or a loved one is experiencing any of the symptoms outlined above, Beyond Boundaries Rehab is here to help. Contact us today
Article by Simone Aldridge | Physiotherapist