Zebras | Ehlers Danlos Syndrome Treatment | Melbourne2019-06-16T03:28:26+00:00

Project Description

EHLERS DANLOS SYNDROME

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Ehlers-Danlos syndrome is a group of disorders that affect connective tissues supporting the skin, bones, blood vessels, and many other organs and tissues. Defects in connective tissues cause the signs and symptoms of these conditions, which range from mildly loose joints to life-threatening complications. The 2017 classification describes 13 types of Ehlers-Danlos syndrome.

An unusually large range of joint movement (hypermobility) occurs in most forms of Ehlers-Danlos syndrome, and it is a hallmark feature of the hypermobile type. Infants and children with hypermobility often have weak muscle tone (hypotonia), which can delay the development of motor skills such as sitting, standing, and walking. The loose joints are unstable and prone to dislocation and chronic pain.

Many people with the Ehlers-Danlos syndromes have soft, velvety skin that is highly stretchy (elastic) and fragile. Affected individuals tend to bruise easily, and some types of the condition also cause abnormal scarring. People with the classical form of Ehlers-Danlos syndrome experience wounds that split open with little bleeding and leave scars that widen over time to create characteristic “cigarette paper” scars.

EHLERS DANLOS SYNDROME SYMPTOMS

  • Loose joints

  • Elastic and fragile skin

  • Skin the bruises easily 

  • Muscle pain and fatigue 

  • Chronic pain

  • Degenerative joint disease

  • Heart valve problems

  • Dysautonomia

  • POTS / OI

  • Chronic fatigue

  • Sleep disorders

  • Mood disturbances

If you think you might have one of the Ehlers-Danlos syndromes (EDS) or hypermobility spectrum disorders (HSD), and particularly if someone in your immediate family has been diagnosed, ask your health professional to be assessed for the condition(s). At Zebras Australia, we can diagnose many forms of Ehlers Danlos Syndrome and will also collaborate with our specialist colleagues for those sub-types requiring further specialists or genetic examination.

A diagnosis is important because, although EDS/HSD are not curable, they are very treatable. Knowing the type of EDS/HSD gives us some idea of where problems might come from and why they’re happening. (Ehlers Danlos Syndrome Society)

ZEBRAS EHLERS DANLOS SYNDROME | PROGRAM

Your path to an EDS/HSD diagnosis and treatment plan starts with an examination. There may be physical testing: using the Beighton Scale to assess how mobile your joints are, a search for abnormal scarring and testing your skin to determine what it feels like and how much it stretches, as well as any additional tests we or our specialist colleagues feel are needed. There’s likely to be a look into your medical history to look for conditions and problems associated with EDS/HSD, and a discussion of your family to help determine if an EDS/HSD was inherited.

THERAPEUTIC NEUROSCIENCE EDUCATION SESSIONS

One-on-one therapeutic neuroscience education sessions will cover the following topics dependent on the patients’ needs assessed during the initial assessment and continuously monitored and discussed between the patient and therapist:

  • Pain physiology education

  • Pacing

  • Home based movement prescription

  • Connective tissue education

  • Relaxation Techniques

  • Goal Setting / Gradual Exposure Planning

  • Trigger identification & Prevention

  • Setback Management

  • Sleep Physiology / Hygiene

  • The Stress Response

  • Dietary Advice

  • DIMS / SIMS

  • Gradual Return to Work & School

  • Travel Planning

  • Graded Motor Imagery

MOVEMENT SESSIONS

We know the importance of a holistic program in the management of Eherls Danlos Syndrome. Movement sessions will be introduced after an initial musculoskeletal assessment and movement screening has been conducted. Movement sessions are carefully constructed and monitored (during and after the completion of the session) to ensure that PEM is NOT triggered by the movement session. These sessions may consist of: one on one or small group Exercise Physiology sessions, Pilates, Physiotherapy, anti-gravity treadmill or yoga and will focus on:

  • Personalised Movement Prescription

  • Address Musculoskeletal Injuries

  • Supervised & Home Based Programs

  • Mindful Movement

  • Physical Load Monitoring

  • Postural Education

  • Breathing Through Movement 

  • Mindfulness

  • Breathing Focus

  • Re-conditioning / improve blood flow

PSYCHOLOGY SESSIONS

Psychology sessions involve education and psychological approaches to manage chronic health issues. These sessions also target any psychological challenges which may have developed due the chronic condition (eg. anxiety, depression) or unrelated factors which may affect mood and stress levels which are likely to impact on symptoms.

  • Emotional Awareness

  • The Impact of Fatigue

  • Neuropsych Education

  • Acceptance Commitment Therapy (ACT)

  • Addressing Barriers to Change

  • Cognitive Behavioural Therapy (CBT)

RELAXATION TECHNIQUES

The goal of these sessions is to have an enjoyable, relaxing experience and to stimulate the parasympathetic (rest & relax) side of your autonomic nervous system to reduce sympathetic overload. These techniques will be implemented within the Zebras facility at also at the patients home.

  • Mindfullness

  • Breathing Focus

  • Restorative Yoga and Pranayama

  • Massage

Start your road to recovery with Australia’s most collaborative and Ehlers Danlos Syndrome program.

START YOUR RECOVERY