Hypermobility Spectrum Disorder (HSD) and hypermobile Ehlers-Danlos Syndrome (hEDS) are hereditary connective tissue disorders. (I've been diagnosed with both conditions but my care team always say how little difference there is between the two conditions so what name is given to my diagnosis hEDS/HSD doesn't matter that much).
HSD and hEDS are caused by faulty collagen. Collagen is basically the 'glue' of the body which keeps joints and organs held together so in HSD and hEDS this can result in a lot of complexities and problems within the body.
For most people being hypermobile isn't a problem and can be quite an advantage, such as for those who are athletes, gymnasts or dancers. But for a small percentage of people, like myself and others with EDS/HSD, it can be very problematic.
Though hypermobility is in the name of both conditions, there are many other symptoms alongside being hypermobile.
'Joint hypermobility' refers to the joints ability to move beyond normal limits. This is tested using the Beighton Score in which each joint that is classified as being hypermobile a point is given. Their are 9 "points" in total. An alternative to this is the 5 point questionnaire - these testing tools are used when diagnosing a person with hEDS/HSD.
Symptoms
Alongside joint hypermobility resulting in lax joints causing reoccurring subluxed/dislocated joints; other symptoms include easy bruising, unusual scarring and stretch marks; chronic pain and fatigue, gastrointestinal problems, poor healing, fragile skin and more.
Co-morbidities include dysautonomia which is an umbrella term for different conditions for example Orthostatic Intolerance and POTS - Postural Orthostatic Tachycardia Syndrome. Patients may also experience organ complications such as with their gastrointestinal system or bladder.
Helpful Links
- What is EDS & the EDS Syndromes
- What is HSD?
- hEDS vs HSD
- Hypermobility Syndromes Association
- Hypermobility Connect
- Ehlers-Danlos Support UK
- Ehlers-Danlos Society
- PoTS UK
