Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos syndrome (hEDS) are disorders affecting the strength and resilience of your connective tissues -the fibres and structures that support and connect the body’s organs, joints, skin, blood vessels, and more. Joint hypermobility and instability, primarily caused by lax ligaments (the connective tissue bands that hold your joints together), are hallmark symptoms of both conditions, often leading to subluxations and/or dislocations.
But because connective tissue is everywhere in your body, when it is too stretchy and more prone to damage, you may experience symptoms far beyond your joints. Many patients complain of seemingly unrelated, system-wide issues including gastrointestinal dysfunction, autonomic nervous system disorders (for example, Postural Orthostatic Tachycardia Syndrome or "POTS"), widespread compensatory muscle tension, organ prolapse, poor wound healing and dermatological dysfunction, unexplained bruising, chronic fatigue and pain, immunological complications and allergies, migraine, and even anxiety and insomnia.
Both HSD and hEDS may have, at least in part, a genetic cause. But that doesn't mean you've always felt this way: some patients report lifelong symptoms, while others report symptom onset or worsening after an illness, injury, or other traumatic event. And while genetic testing can help rule out other subtypes of Ehlers-Danlos, there is no definitive genetic test for either HSD or hEDS. Instead, diagnosis involves a thorough medical history, physical assessment of joint range of motion, and evaluation of related systemic symptoms. In cases where someone with symptomatic hypermobility does not meet the strict diagnostic criteria for hEDS, they are diagnosed with HSD. It's important to note that these criteria are currently under reevaluation and that the difference in diagnosis has little to no effect in how each condition is treated, nor should it be taken as a measure of the severity of your condition. Each condition exists on a wide spectrum.
It's a lot to take in. But there is help. Physiotherapy, occupational therapy, and other targeted therapies can help you manage HSD and hEDS by helping you regulate your nervous system, create energy-saving strategies for daily living, improve joint stability and strength, and more. Taken together, these steps often lead to better pain and energy management and fewer injuries.
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