For Individuals

Guiding you on your
Hypermobility journey

1 in 5 Australians over the age of 45 complain of chronic pain (a major symptom of EDS, hEDS & HSD)

Up to 90% of HSD, hEDS and EDS patients present to GPs and physios with pain as their first symptom

More than 50% of patients with EDS and hEDS report clinician-related patient traumatisation and up to 90% felt invalidated by their clinicians

More than 50% of patients with Autism Spectrum also are hypermobile

Up to 46% of children with EDS and HSD are also diagnosed with ADHD

EDS, hEDS, and HSD disproportionately impact females, with 80-90% of cases occurring in women

57% of patients with chronic pain in Australia rely on pain medications/analgesics

For Individuals

We’re here to transform your diagnosis & care journey if you’re living with Hypermobility, HSD, Hypermobile Ehlers-Danlos Syndrome (hEDS) & related conditions by:

Bridging information gaps

Evidence-informed articles and updates to empower you to better understand your situation and communicate confidently with your healthcare team. Read our articles, follow us on Facebook or Instagram, or subscribe to our newsletter.

Enabling self-advocacy via self-help tools that empower you

Use our free Self-Screening Test for Hypermobility to get a comprehensive, personalised summary (PDF report) to help support your self-advocacy and guide discussions with your GP, specialist, or allied health professional.

Diagnosis support

Beyond the Bend™ is our specialist diagnosis support service (via telehealth). It builds on your Self-Screening Test results to produce a clinically validated report, reviewed and signed-off by a Hypermobility Health Connect® accredited practitioner with expertise in EDS/hEDS, HSD and POTS. The report is designed to give you clarity, a personalised plan, and a document that can be directly addressed to your GP or specialist to progress your diagnosis.

Health conditions and concerns we support

Stay informed. Stay empowered.

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How it works

Bridging the gap between your questions and the support you need.

Hypermobility-related conditions like HSD and hEDS can take years to diagnose. Many individuals struggle with unexplained symptoms, misdiagnosis, or feeling unheard. Finding the right information and support is crucial.

At Hypermobility Health Connect® we simplify the journey to understanding and managing these conditions and deliver services designed to help address current diagnostic bottlenecks.

Here’s how we support and guide you every step of the way.

01

Take the test! (it's free)

Take our evidence-based online Self-Screening Test to find out if you might benefit from professional support. The test takes under 15 minutes to complete.

02

Discuss results with your health professional

Take the personalised PDF report we send you when you complete your Self-Screening Test into appointments with your GP, specialist, or allied health professional to help guide informed discussions and next steps.

03

Need diagnosis support?

Beyond the Bend™ is our specialist diagnosis support service (via telehealth). It builds on your Self-Screening Test results to give you clarity, a personalised plan, and clinically validated, signed-off report that can be directly addressed to your GP or specialist to progress your diagnosis.

Why take our test?

Our Self Screening Test is the first step in your diagnosis and care journey if suspect you’re living with Hypermobility, HSD, Hypermobile Ehlers-Danlos Syndrome (hEDS) or related conditions:

  • Self Screening Test for Hypermobility, HSD and hEDS
  • Based on latest research developments
  • Takes approx. 15mins to complete
  • Receive a personalised summary you can share with your GP

Affiliations & Memberships

Latest Articles

Building a community, to make a difference.

At Hypermobility Health Connect® we empower individuals with Hypermobility, HSD, EDS, and related conditions, including POTS, Dysautonomia, MCAS, and neurodivergence. We also equip healthcare professionals with best-practice knowledge to enhance care, bridging the gap between lived experience and professional expertise.

Together, we foster a more informed, connected, and supportive community.

References

15 Years

Average time to get a hEDS or EDS diagnosis in Australia.

75%

Percentage of patients with EDS who believe they have been misdiagnosed

Up to 88%

Percentage of patients with Fibromyalgia who also have hEDS or EDS

3 Years

Average waiting list to see a HSD, hEDS or EDS specialist in Australia

Support & Community Groups

Find a support group to connect, share, and find guidance for managing Hypermobility, HSD, EDS and related conditions together.

  • Support from people with lived experience
  • Find your community and support
  • Local and national networks

Want to add your support group to the list? Contact us.

The Hypermobility Health Connect® difference

  • Personalised tools to evaluate and manage Hypermobility, HSD & hEDS
  • Raising awareness of Hypermobility, HSD, hEDS and related conditions
  • Evidence-based resources for individuals and healthcare professionals
  • Support with holistic and regular therapy/medical treatment options
  • Empowering self-management and advocacy for improved quality of life
  • Connecting healthcare professionals to collaborate and share expertise
  • Specialised training and mentoring for accurate diagnosis and treatment
  • Growing the number of experienced clinicians to expand access to care

Stay informed. Stay empowered.

Subscribe to our newsletter for the latest on diagnosis, treatment, research and training. No spam. Unsubscribe anytime.

Individual Subscribe Form

Prefer socials? Follow us on Facebook or Instagram for more regular insights and updates.

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Frequently asked questions

Your questions,
answered

Hypermobility refers to joints that move beyond the normal range of motion. While some
individuals with hypermobility experience no symptoms, others may suffer from pain, fatigue, and other health conditions. When hypermobility is accompanied by symptoms such as pain, fatigue,and joint instability, it is referred to as symptomatic hypermobility. Two primary conditions associated with symptomatic hypermobility are hypermobility spectrum disorders (HSD) or Ehlers-Danlos syndrome (EDS).

How Pain, Fatigue and other illnesses are linked to Hypermobility

  1. Joint Instability: Excessive movement in the joints can lead to instability, strains, and sprains, causing the muscles to work harder to support the joints. This can result in muscle fatigue and pain [1]
  2. Microtrauma: Repeated overextension of joints can cause small injuries to the surrounding tissues, leading to chronic pain and inflammation.
  3. Muscle Overuse: To compensate for joint laxity, muscles may become overworked, protecting joints, and leading to muscle fatigue and soreness.
  4. Nerve Compression: Unstable joints can compress nearby nerves, causing pain and discomfort.
  5. Autonomic Dysfunction: Some individuals with hypermobility may experience issues with their Autonomic Nervous system, which controls automatic body functions like heart rate, blood pressure, digestion, and temperature regulation [2] [3] [4] . When these functions do not work properly, it can lead to symptoms like dizziness, fatigue, sleep, anxiety, and digestive issues.
  6. Other associated health conditions include
    a. Poor coordination, Poor handwriting 
    b. Autism and Attention deficit disorder 
    c. Bowel and Bladder and Gynaecological problems 
    d. Difficulties with Sleep
    e. Allergies and Mast Cell Activation Syndrome
    f. Headaches and Migraines

Understanding the link between hypermobility and these symptoms is crucial for effective
management and improving quality of life. If you have any specific questions or need more details, feel free to ask

Hypermobility refers to when someone’s joints bend further than most people. It is excessive (hyper)- movement (mobility) of the joints of the human body. People were often called double- jointed. Not all people with hypermobility have pain or other symptoms, which is called asymptomatic hypermobility. Many health disorders, such as fibromyalgia, arthritis, autism, and Ehlers-Danlos Syndrome, can involve hypermobility. Therefore, it is crucial to medically investigate the cause of your hypermobility, especially if you have other health conditions and symptoms.

Hypermobility Spectrum Disorder (HSD) is a diagnosis given when hypermobility causes symptoms like ongoing pain or joint instability but does not meet the criteria for a specific genetic condition like Ehlers-Danlos Syndrome (EDS). HSD can present with other body wide symptoms that impacts the function of a person’s everyday life. HSD is recognised as a distinct disorder requiring management and care.

Hypermobile Ehlers-Danlos Syndrome (hEDS) is the most common EDS subtype. It shares many features with HSD, including hypermobile and often painful joints, but hEDS has stricter diagnostic criteria and a genetic basis that researchers are still working to identify.

Ehlers-Danlos Syndrome (EDS) is a group of genetic connective tissue disorders affecting the skin, joints, and other tissues. There are 13 subtypes, each with specific genetic causes and
clinical features.

Proper differential diagnosis is crucial for effective management and in some cases, lifesaving
interventions.

Growing up with Hypermobility or Ehlers-Danlos Syndrome (EDS) can present a variety of unique challenges and experiences. Here are some signs that might indicate you grew up with these conditions:

  1. Extraordinary or even moderate Flexibility compared to your friends: You could perform “party tricks” with your joints, like bending your fingers backward or touching your toes to your forehead.
  2. Frequent Bruising: You often had bruises without remembering how you got them.
  3. Joint Pain with Activity: Physical activities like running or jumping caused joint pain.
  4. Frequent Joint Dislocations: Simple activities sometimes resulted in sprains or dislocated joints.
  5. Poor Hand Strength: Writing caused hand cramps and pain.
  6. Endurance Issues: Holding your arm up in class, managing to keep up in sports lessons or running was exhausting.
  7. “Growing Pains”: Constant leg pain was often dismissed as normal growing pains.
  8. Toe Walking: You often walked on your toes, leading to sore feet.
  9. Discomfort on Long Car Rides or sitting at school: sitting for extended periods caused hip or back pain.
  10. Frequent Falls and Clumsiness: You were always tripping or bumping into things.
  11. Popping Joints: Your joints frequently clicked or popped.
  12. Foot Pain in Unsupported Shoes: Certain shoes made your feet ache intensely, or you were born with club feet or hip issues.13. Digestive Problems: Issues like bloating, nausea, and reflux were common.
  13. Constant Fatigue: You felt exhausted after minimal exertion.
  14. Chronic Body Pain: Pain in various parts of your body was constant.
  15. Sensitivity to Touch: Certain fabrics or clothes irritated your skin.
  16. Strange Sitting Positions: Sitting normally was uncomfortable, so you adopted unusual positions.
  17. Frequent “Butterfingers”: You often dropped things and struggled to hold objects securely.
  18. Blood Vessels and Bleeding: Minor scrapes took a long time to heal, and your skin bruised easily.
  19. Knee and Ankle Pain with Running: Running led to knee pain, shin splints, and rolled ankles.
  20. Delayed Milestones: You experienced delays in walking and crawling due to joint hypermobility.
  21. Chronic Pain Misdiagnosed: Chronic pain was often mistaken for growing pains.
  22. Difficulty with Fine Motor Skills: Tasks like tying shoelaces were challenging.
  23. Balance Issues: Joint instability affected your balance.
  24. Dental Issues: You had dental problems like overcrowding and weak enamel.
  25. Frequent Subluxations: Partial dislocations were common, especially in shoulders, hips, and knees.
  26. Stretchy Skin: Some people with EDS have unusually stretchy skin.
  27. Chronic Fatigue: Constant effort to stabilize joints led to fatigue.
  28. Coordination Difficulties: Poor proprioception made coordination challenging.
  29. Handwriting Issues: Writing was difficult due to joint instability and muscle fatigue.

These signs highlight the diverse and often challenging experiences of growing up with
hypermobility or EDS. If you have any more questions or need further details, see our detailed
articles and references at….

Affiliations & Memberships

If you want to add your support group to the list, or know of another group that you think we should add, please Contact us

Potential Support

Connective Tissue Disorders Charity Australia

Connective Tissue Disorders Network Australia (CTDNA) is a collaborative initiative of individuals living with or caring for those with Heritable Connective Tissue Disorders (HCTD). Many members are both patients and carers. CTDNA aims to establish a national network of advocates, healthcare professionals, and researchers interested in HCTD to improve care and management for Australians affected by these conditions.

Read More

Hypermobile ACT

A support group for individuals living with or caring for those with Hypermobility Syndromes or Ehlers-Danlos Syndromes.

Ehlers Danlos Support South Australia

An online support group for individuals with Ehlers-Danlos Syndrome and their families in South Australia.

EDS & Comorbidities Support Australasia Ehlers-Danlos Syndrome AU NZ

An online support group for individuals in Australia and New Zealand with Ehlers-Danlos Syndrome and related comorbidities.

EDS Support Group Australia

A support group for individuals in Australia who have Ehlers-Danlos Syndrome or care for someone with the condition.

Rare Voices Australia

Rare Voices Australia (RVA) is the national peak body for Australians living with rare diseases. RVA advocates for improved health, disability, and policy outcomes. The organisation collaborates with people living with rare diseases, governments, peak bodies, researchers, clinicians, and industry stakeholders.

Read More

EDS Australia National Support Group

A Melbourne-based community support group for individuals with Ehlers-Danlos Syndromes, Hypermobility Spectrum Disorders, and related conditions. The group provides information and support to people of all ages.

Read More

POTS (Postural Orthostatic Tachycardia Syndrome) Support Group Australia

An Australian support group for individuals diagnosed with POTS and their families and friends seeking a better understanding of the condition.

Read More

POTS, Long Covid & ME/cfs/EDS Australia

A support group providing information for individuals in Australia with POTS (Postural Orthostatic Tachycardia Syndrome), Long Covid, MCAD (Mast Cell Activation Disorder), ME/CFS, Ehlers-Danlos Syndrome, CSF leaks, Retroflexed Odontoid, Empty Sella Syndrome, Intracranial Hypotension, ASD (Autism Spectrum Disorders), GERD, IBS, FODMAPS, Chiari Malformation, and related conditions.

Read More

Marfan Network Australia

Marfan Network Australia is a nationwide support group for individuals affected by Marfan Syndrome. It provides access to information on Marfan Syndrome signs, symptoms, and related connective tissue disorders, maintains a directory of national events and meetings, and offers regular updates on the latest medical research.

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Marfan Association Queensland

A volunteer-run support group providing information and shared experiences for individuals and families affected by Marfan Syndrome. The group offers guidance on diagnosis, management, and treatment. Open to individuals with Marfan Syndrome, their families, carers, healthcare professionals, and other interested parties. Supporting enquiries across Australia.

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Marfan Syndrome & Inherited Aortopathy Clinic

A multidisciplinary clinic at The Alfred in Melbourne that provides specialised care for individuals with Marfan Syndrome and related aortopathies. The clinic aims to improve health outcomes through expert management.

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EDS and HSD -Let’s Chat: Virtual Support Groups

“International virtual support groups hosted by Ehlers-Danlos Society staff. Monthly and quarterly meetings provide opportunities for individuals to share experiences and connect with others worldwide. These groups serve as discussion forums for support and networking. Medical advice is not provided.

Available chat groups:
– EDS and HSD
– Parents
– Teens (Ages 13-18)
– vEDS
– Partners and Spouses
– Men
– LGBTQIA+
– Community of Colour”

Read More

Ehlers-Danlos Support UK

A UK-based organisation with over 50 online and in-person support groups. These groups provide safe environments for individuals to connect, share experiences, and learn from each other. Regional Facebook groups are available for members.

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Dysautonomia International - Australia Support Group

A support group for individuals in Australia affected by Dysautonomia.

Invisible Illnesses Australia (Fibromyalgia Support & Advice)

A support organisation focused on raising awareness of Fibromyalgia, a chronic condition that causes widespread pain, fatigue, and other symptoms that impact daily life.

Read More

Chiari and Syringomyelia Australia

An Australian support group for individuals with Chiari Malformation, Syringomyelia, and related conditions.

Australian Pain Management Association (APMA)

A support organisation promoting self-management of chronic pain through evidence-based treatment. Open to individuals living with chronic pain and their carers.

Read More

Annabelles’s Challenge Vascular EDS Charity

A UK-registered charity supporting individuals and families affected by Vascular Ehlers-Danlos Syndrome.

Ehlers-Danlos and Joint Hypermobility Syndrome Australia

A resource group providing information on Ehlers-Danlos Syndrome and Joint Hypermobility Syndrome.

Ehlers-Danlos Syndrome (EDS Western Australia)

West Australian based support group for families supporting and caring for those with Ehlers-Danlos Syndrome. The group supports each other, swaps ideas, recommends medical professionals and arrange meet ups. This group is for individuals NOT for health professionals who treat those with Ehlers-Danlos Syndrome.

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