Why Hypermobility Matters

Stats & Facts:

Estimated 10% of Population is Hypermobile
Estimated 1/500 EDS/JHS combined (HSD/hEDS 2017 Classification – 2019 UK – https://bmjopen.bmj.com/content/9/11/e031365)
Large Gender Difference – 70% female
8.5y delay to the average age of dx between women & men
Delayed Dx in Children – linked to trauma, misdiagnosis, abuse and disease progression
Early Diagnosis is Critical – prevention, comorbid conditions presentation, & long-term management

Genetics:

Hypermobility stems from the genetics of our connective tissues — i.e. how our bodies are built according to DNA. And …. connective tissue is e-v-e-r–y-w-h-e-r-e. It’s the “glue” that holds our bodies together. Hypermobility can also be acquired. Overuse, overstretching, medication reactions, environmental triggers, and several types of auto-immune diseases can also play a role in the “hyperlaxity” of someone’s joints — and all are commonly associated with connective tissue inflammation, pain, and weakness.

Multisystemic:

A structural or functional mutation or issue with one the building block components can lead to multisystemic issues, dysfunction and disability — only to be complicated by lack of awareness and education, and compounded by misdiagnosis and preventable mistakes.

Care & Management Guidelines:

Movement and nutrition are paramount for anyone wanting to restore function & live well with EDS and other hypermobility related disorders. Lifestyle changes and approaches to behavior modification, such as pacing, changing sleep patterns, and incorporating mind-body strategies are often helpful, if not essential, for managing associated pain, chronic fatigue, and for maintaining psychological well-being. Most importantly, implementing such practices as routine in daily life, help maintain overall strength & stability, lessening, if not preventing, any potential impacts caused by a deconditioning “spiral.”

Prevention:

Awareness, education, and early intervention are critical. Over-medicalization or lack of proactive approaches to living well with joint hypermobility can cause damage to the connective tissues, progress multisystemic dysfunction, and cause additional or life-long pain, suffering and sometimes disability.

Self-Care:

Movement and nutrition are paramount for anyone wanting to restore function & live well with EDS and other hypermobility syndromes. Lifestyle changes and approaches to behavior modification, such as pacing, changing sleep patterns, and incorporating mind-body strategies are often helpful, if not essential, for managing associated pain, chronic fatigue, and for maintaining psychological well-being. Most importantly, implementing such practices as routine in daily life, help maintain overall strength & stability, lessening, if not preventing, any potential impacts caused by a deconditioning “spiral.”

Lifestyle:

There’s no cure for hypermobility syndromes. The main treatment is improving muscle strength, joint stability, and proprioception, so your joints are protected and movement is safe and empowering vs. discouraging. Positive lifestyle modifications, such as mind-body strategies facilitate long-term behavior change through helping manage pain, ease anxiety, and decrease symptoms of comorbid conditions

Citations:

Demmler JC, Atkinson MD, Reinhold EJ, et al Diagnosed prevalence of Ehlers-Danlos syndrome and hypermobility spectrum disorder in Wales, UK: a national electronic cohort study and case–control comparison BMJ Open 2019;9:e031365. doi:10.1136/bmjopen-2019-031365