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Ehlers-Danlos Syndrome & Hypermobility Spectrum Disorder

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About

Hypermobility Spectrum Disorder (HSD) and Ehlers-Danlos Syndrome (EDS) encompass a range of connective tissue disorders characterised by joint hypermobility, skin fragility, and other tissue abnormalities. EDS, particularly the hypermobile type (hEDS), lacks a specific genetic marker, making diagnosis challenging. 

Both HSD and hEDS can cause significant physical limitations, including joint dislocations, chronic pain, and fatigue. Understanding and managing these conditions involve recognising the spectrum of symptoms and tailoring treatment to individual needs. For detailed diagnostic criteria and information, resources are available on the EDS Society website.

Common presentations and Co-Morbidities:

The Ehlers-Danlos syndromes (EDS) constitute a collection of 13 inheritable disorders related to connective tissue. These disorders stem from genetic mutations impacting connective tissue integrity. Each EDS type displays unique characteristics outlined by specific diagnostic benchmarks, with the most common type being Hypermobile EDS (hEDS). 

 

Common characteristics include joint hypermobility, skin pliancy, and tissue frailty which are consistently present across all variants of EDS.

 

Hypermobility Spectrum Disorders (HSD) encompass a group of connective tissue conditions characterized by excessive joint flexibility, leading to joint instability, susceptibility to injuries, and discomfort. Additionally, individuals with HSD frequently experience a range of associated health concerns such as fatigue, headaches, gastrointestinal disturbances, and dysfunction of the autonomic nervous system.

Individuals with Ehlers-Danlos syndromes (EDS) and Hypermobile Spectrum Disorder (HSD) often experience a range of comorbidities, which are additional medical conditions that can coexist alongside EDS or HSD. Some common comorbidities associated with EDS and HSD include Chronic pain, Dysautonomia, Gastrointestinal issues, Cardiovascular issues (not common in HSD), Chiari Malformation (common in Cranio-cervical instability), headache and/or migraines, joint hypermobility resulting in dislocations and subluxations, fatigue, depression and anxiety, Mast Cell Activation Syndrome, and joint degeneration.It's important to note that the severity and specific comorbidities can vary widely among individuals with different types of EDS and HSD. Management typically involves a multidisciplinary approach with specialists in areas such as genetics, rheumatology, pain management, cardiology, and physical therapy.

Program background

Through our early work with patients living with Chronic Fatigue and Pain, we started to notice more and more comorbidities of dysautonomia (OI and POTS), as well as joint hypermobility. Over the years, it became more and more prominent this was indeed an area our team at Active Health Clinic would need to learn more in, in order to understand the complexities of various connective tissue disorders and further assist this population on how to take control of their health journey.

Our Program

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Our program consists of approximately 10-15 individual sessions over 6 -18 months. It is designed and focused on long-term management of connective tissue disorders, and helps our clients make and maintain gains, through a holistic approach.

The program covers:

EDS/HSD neurophysiology and pathophysiology

Activity stabilisation and pacing

Goal setting and forward planning daily activities

Identifying triggers and developing a setback plan

Symptom mapping

Understanding hormones and managing the cycle (if applicable)

Sensitisation and pain education (if applicable)

Strength training (if applicable)

Common comorbidities and management strategies as applicable

Setting an appropriate and safe movement/exercise routine (if/when applicable)

Sleep physiology and hygiene

Stress and anxiety management

Addressing nutritional needs (if applicable)

OI/POTS management (if applicable)

Mindfulness techniques and management (if applicable)

Pilates (if applicable)

Yoga (if applicable)
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Our program aims to help you establish a ‘normal day’ or return to work, university or school, and day to day life. Through pacing and gradual return to activity, we are able to slowly and confidently build your capacity, without increasing your symptoms. We know this journey is a bit rocky so we give you the skills to deal with any future hurdles, through setback planning and providing you with a therapy manual you can turn to in times of need.

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Cost and questions

For program costs and rebates available, please call the clinic. 

Do I need a referral? What if I can't get to your clinic? 

A referral isn't always necessary however may impact on your ability to get a rebate - speak to our friendly reception staff and they can help you.
 

Our clinics are located in Blackburn, Mornington, Bendigo & Essendon, Victoria, however, all services are offered via telehealth also.

Dietetics in Ehlers-Danlos Syndrome (EDS) and Hypermobility Spectrum Disorders (HSD):

Those living with HSD and EDS can experience a range of different symptoms in many different systems of the body. These commonly include a range of gastrointestinal symptoms, such as difficulty swallowing, reflux, nausea, early satiety, bloating, abdominal pain, constipation or diarrhoea, just to name a few. 

 

Our dietitians understand the link between HSD and EDS and the gastrointestinal system, and how this can impact your ability to consume food. They will support you with managing these symptoms while also ensuring you are doing the best that you can to get the nutrients your body needs, which can be particularly challenging when these symptoms present.

 

Some topics that may be covered with a Dietitian to support you and your body when living with HSD and EDS include:

Strategies to assist with the management of gastrointestinal symptoms - using food based approaches and/or other nervous system based strategies.

Support with weight restoration, stability and maintenance, when appropriate.

Understanding appetite and support with regular eating to support nutritional adequacy.

Support with making food more accessible and fatigue friendly

Eating patterns to improve energy levels and support overall wellbeing.

What Our Patients Are Saying

“For all the CFS and fibromyalgia suffers out there, time, patience and pacing only make us stronger. I send out love, courage, faith and healing. We can get better!”

- Lee-Anne, 33

Thanks to everyone at AHC for the program and for helping me get my life back. If you doubt if it works, or are afraid to believe that you can be well again, I challenge you: try it and prove it doesn’t work! What have you got to lose?

- Gail, 47

"Active Health Clinic, you are so understanding and compassionate for a terrible illness and I hope that many more will use your services on their path to recovery"

- John, 28

Our programs are tailored to YOUR symptoms

Chronic Fatigue Syndrome

ME/CFS, Post-Viral Conditions, Long Covid, Autoimmune & Neurological related fatigue

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Hypermobility & Connective Tissue Disorders

Ehlers-Danlos Syndrome (EDS), Hypermobility Spectrum Disorder (HSD)

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Pain Syndromes

Fibromyalgia, Chronic Regional Pain Syndrome, Rheumatoid Arthritis

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Sleep 
Disorders

Narcolepsy, Idiopathic Hypersomnia

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Dysautonomia

Orthostatic Intolerance (OI), Postural Orthostatic Tachycardia Syndrome (POTS)

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Mast Cell Disorders

Mast Cell Activation Syndrome (MCAS), Mastocytosis

Long COVID

ME/CFS, Post-Viral Conditions, Long Covid, Autoimmune & Neurological related fatigue, Fibromyalgia

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Associated Diet Conditions

Gastroparesis, Inflammatory Bowel Disease (IBD), Irritable Bowel Syndrome (IBS), MCAS, Eating Disorders, MALS

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