Each May is Ehlers-Danlos Awareness Month, so in this blog we’re shining the spotlight on the most common type: Hypermobile Ehlers-Danlos Syndrome (hEDS).
Some people with hEDS may experience significant and debilitating symptoms such as pain, chronic fatigue, and gastrointestinal disorders. In saying that, it is considered to be one of the least severe subtypes of Ehlers-Danlos syndrome.
Before we elaborate more on the symptoms listed above, discuss how a diagnosis may be reached, and run through several FAQs about hEDS, we’re going to briefly touch on what Ehlers-Danlos syndrome (EDS) is.
What is Ehlers-Danlos Syndrome?
Ehlers-Danlos syndromes (EDS) are a group of connective tissue disorders that are hereditary.
At present there are 13 subtypes of EDS .
What is Connective Tissue?
Connective tissue consists of proteins including collagen and it surrounds your joints (knees, ankles, wrist, hips, etc.). Skin is made of connective tissue and there is even connective tissue around your heart.
Connective tissue is what gives support to your joints so that when you try to bend – the tissue stops you from going too far.
People with hypermobility and specifically EDS have abnormally stretchy connective tissue that can cause issues around multiple systems in their body.
“In the Ehlers-Danlos syndromes, there are faults in the genes that determine how the body makes collagen, and/or in some subtypes other proteins that work alongside collagen. This leads to the connective tissue becoming weaker. Different tissues and organs can be affected in diverse ways depending on the genetic fault. This explains why there are several subtypes of EDS,“ The Ehlers-Danlos Society.
What is Hypermobile Ehlers-Danlos Syndrome?
Hypermobile Ehlers-Danlos syndrome (hEDS) is the most prevalent type of EDS.
Each person with the condition may experience different symptoms, but generally it is characterised by:
- Hypermobile joints,
- Stretchy skin,
- Frequent subluxations/dislocations of joints and
- Scoliosis.
People with hEDS may also have frequent fractures, scarring and bruising of the skin, white papules around the heels, abdominal hernias, pelvic floor issues and issues of the heart.
“The genetic basis for hypermobile EDS (hEDS) is still unknown, so an hEDS diagnosis rests on the criteria and what your doctor finds during your examination,” The Ehlers-Danlos Society.
While hEDS is thought to be one of the least severe types of EDS, it can be a serious condition for some, particularly if any vascular/heart related issues are included in your diagnosis.
If you believe you or someone you love has hEDS, it is important to seek a diagnosis from a qualified medical professional. In addition, early management can help to stop secondary issues from becoming worse as you get older. Keep reading to view the criteria for diagnosis and information about managing the disorder.
Hypermobile EDS and Hypermobility Spectrum Disorders
Hypermobile EDS is different from Hypermobility Spectrum Disorders (HSD). Namely, the criteria for hEDS is stricter. More on Hypermobility Spectrum Disorders here.
Hypermobile EDS Symptoms
Symptoms and their severity will vary between those with Hypermobile EDS, but you may notice the following at different stages of life.
Common Hypermobile EDS Symptoms in Toddlers
A toddler may present with:
- tiredness, fatigue,
- wanting to be in a pram a lot,
- pulled elbows from minor incidents,
- trips and falls more than other toddlers,
- poor coordination,
- frequent growing pains at night, and
- W-sitting
Common Hypermobile EDS Symptoms in Primary School Children
In primary school, parents may notice:
- the child is too tired to walk home or walk to the car from their classroom,
- difficulty keeping up with their peers in physical activities,
- night pain and more frequent growing pains,
- frequent strains, sprains, subluxations, dislocations, or fractures.
Common Hypermobile EDS Symptoms in Pre-teens and Teens
Pre-teens and teens with the condition may complain of or present with:
- hip pain,
- postural issues,
- a sport they like being too physically demanding, and
- pain related to increase in studying (eg. neck, forearm, back).
How is Hypermobile EDS Diagnosed?
Diagnosis of hEDS involves meeting an extensive list of criteria, as well as testing to exclude any other type of connective tissue disorder.
There are 3 domains of criteria including the following:
Hypermobile EDS Criteria
- Beighton Score of 6-9/
- A: having at least 5 of a list of features including skin and/or pelvic floor concerns and/or certain features classed as Marfanoid features. Some examples of Marfanoid features include:
- Dental crowding
- Mitral valve prolapse (heart condition)
- Arm span to height ratio is longer than normal
- Abnormal digits (eg. An extra finger or toe)
- Aortic root dilations (heart condition)
- B: a family history
- C: at least 1 of the following 3 presentations:
- Musculoskeletal pain in 2 or more limbs recurring daily for at least 3 months
- OR
- Widespread pain for ≥ 3 months
- OR
- Recurrent joint dislocations in the absence of trauma, 3 or more atraumatic dislocations in the same joint, or atraumatic dislocations in 2 different joints occurring at different times, or medical confirmation of joint instability at 2 or more sites not related to trauma
- The absence of other underlying Heritable Disorder of Connective Tissue including other variants of EDS
As you can see the list is extensive.
A physiotherapist that has an interest in the area of hypermobility can pick up on some of the physical features, however a referral to a rheumatologist is needed for an official diagnosis.
Managing Hypermobile Ehlers-Danlos Syndrome
Management of hEDS typically takes a multidisciplinary approach that includes communication between a GP, rheumatologist, physiotherapist, and occupational therapist.
Sometimes other health practitioners are involved depending on your concerns.
Physiotherapy and Hypermobile EDS
Physiotherapy management for Hypermobile EDS may include:
- pain relief,
- education on how to ease pain,
- strength exercises, and
- balance exercises
Oftentimes children with the disorder feel symptoms such as fatigue or pain hours later after an activity or even the next day. So, your physiotherapist may also offer education and advice on pacing and appropriate amounts of activity.
A physiotherapist will aim to put together a personalised management plan of hEDS that can be done at home.
Hypermobile EDS and Pregnancy
During pregnancy, your body adjusts to the baby by stretching things out more. It is important for hEDS to know how to manage this to avoid things like pelvic pain, lower back pain and pelvic floor problems.
There are many things that can be done before or during your pregnancy to minimise any unwanted side effects of hEDS such as include lower back pain, rib pain, controlling your bladder.
A physiotherapist can also help those with hEDS who are planning on getting pregnant and are worried about how the disorder may affect their pregnancy.
Hypermobile Ehlers Danlos Syndrome
Do you have any further questions about Hypermobility Ehlers Danlos Syndrome or would you like a tailored management plan put together by one of our trusted physios in Brisbane?
We have clinics at Samford, Ashgrove, and Moorooka. Book today.
How We Can Help
✔ Pain Management & Relief
✔ Joint Stability & Strength Training
✔ Postural Education & Movement Retraining
✔ Injury Prevention & Rehabilitation
✔ Fatigue & Autonomic Dysfunction Support
✔ Exercise Programs Tailored to Your Body
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