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HWN Suggests

Hypermobile Spectrum Disorders

Hypermobile Spectrum Disorders (HSD) are a spectrum of disorders characterised by symptomatic JH and are usually diagnosed after other connective tissue disorders like Ehlers-Danlos Syndrome (EDS) have been excluded. HSD is not a lesser diagnosis and can be quite severe and require similar management and care as Hypermobile EDS. Historically this used to be called Benign Joint Hypermobility - but the word "benign" was felt to be dismissive of the level of symptoms being experienced by patients.

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Articles of Interest

Are you “Double Jointed”? You may want to read this

You know the person- maybe it was you. Your thumb touches your forearm, you can dislocate your shoulder at will, your skin is really, really stretchy. Remember when you put your feet behind your head and walked on your hands? Everyone loves that trick.

Bendy joints, stretchy skin, clumsiness. Why hypermobile Ehlers-Danlos Syndrome is often missed – and what it has to do with autism

There is growing interest in a connective tissue condition called Ehlers-Danlos Syndrome. As more adults are diagnosed with autism, some might not be aware their history of bendy joints and clumsiness are indications they may also have a common form of Ehlers-Danlos Syndrome. What is this condition and how are the two diagnoses connected?

hEDS, JHS and HSD

Although there are some differences between the diagnostic terms used, at the moment everyone within this group may experience the same potential symptoms, the same linked conditions, and require the same symptom-based treatment and management, with an awareness that a heritable disorder of connective tissue may be present. More research is needed before clear, evidence based diagnostic guidelines that differentiate between people in this group can be brought into action. So while research is ongoing, there are a wide variety of terms which might be used in practice

Hypermobile EDS vs. Hypermobility Spectrum Disorders

Two primary disorders are often associated with joint hypermobility: Hypermobile Ehlers-Danlos Syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD). These conditions fall under the umbrella term of joint hypermobility disorders.

Hypermobility Spectrum Disorders

So, like IBS, it is a diagnosis of exclusion once all other likely causes are ruled out, but the patient still shows signs of hypermobility of varying degrees, with or without symptoms. Some people are just bendy with no apparent issues. The could just be related to someone with a form of connective tissue disease that lends to this.

Hypermobility spectrum disorders (HSD)

Hypermobility spectrum disorders (HSD) are connective tissue disorders that cause joint hypermobility, instability, injury, and pain. Other problems such as fatigue, headaches, GI problems, and autonomic dysfunction are often seen as part of HSD.

Hypermobility spectrum disorders: A review

It remains a clinical challenge identifying when joint hypermobility (JH) is responsible for pain. Previous nomenclature utilized terms such as (benign) joint hypermobility syndrome (JHS) but this was updated in 2017 as advances in genetics provide a basis for nearly all variants of Ehlers-Danlos syndrome (EDS) with the exception of hypermobile EDS (hEDS). New terminology describes hypermobility spectrum disorders (HSDs) as the updated term for JHS.

I am double jointed. Does this mean I have more joints that other people?

The term double-jointed is a misnomer. The name implies that a person has twice the number of joints as normal and thus their joints allow for greater movement outside of the normal range of motion for that joint. What this term actually refers to is that a person has greater mobility or flexibility of their actual joint and can move their joint beyond its normal end range without experiencing pain and discomfort. Hypermobile joints tend to be inherited. It occurs in about 10-25% of the general population.

Is There Any Downside to Being Double-Jointed?

In reality, there’s no such thing as being double-jointed. (Wait, what?) The term implies that you have two joints where there should be one, which isn’t possible, says orthopaedic surgeon Michael Star, MD. What people think of as double-jointedness is actually hypermobility, or joints that can move beyond the typical range.

Understanding Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

When symptomatic joint hypermobility is experienced, but individuals do not fully meet for hEDS (or any other heritable disorder of connective tissue) a patient may be given a diagnosis of ‘hypermobility spectrum disorder (HSD).

Resources

Hypermobility Syndromes Association

The Hypermobility Syndromes Association is here to support everyone with symptomatic hypermobility – whatever the cause, however mildly or severely they may be affected, and whether or not they are diagnosed.