Physical Activity in Hypermobile Ehlers-Danlos Syndrome and Generalized Hypermobility Spectrum Disorder
Creators: Houston, Annecy
Publisher: name: University of Alberta Library
Year: 2024

<p>Hypermobile Ehlers-Danlos Syndrome and Generalized Hypermobility Spectrum Disorder (hEDS/G-HSD) are two connective tissue disorders that are tightly intertwined as they both result in joint hypermobility-induced musculoskeletal manifestations and are placed on the same clinical spectrum. The combined prevalence of hEDS and G-HSD is estimated to be between five to eight out of 5,000, with a higher occurrence in women. These disorders solely rely on symptom prevention and management as there is no known cure. Physical activity is thought to be the most effective treatment for disorder management as it may reduce many commonly experienced symptoms by people with hEDS/G-HSD. This thesis aimed to assess the current evidence for PA as a management strategy and its uptake in people with hEDS or G-HSD by 1) determining the effectiveness of PA interventions on various symptoms and 2) identifying the habitual PAs as well as the barriers and facilitators to PA of Canadians with hEDS/G-HSD.<br>
A scoping review identified 11 PA trials consisting of strengthening, balance and proprioceptive exercises. The results from both low- and high-load strengthening programs suggest that they can improve muscle strength and endurance, joint stability and reduce joint laxity, which in turn can reduce the risk of injury and disabling symptoms. Most studies demonstrated an improvement in pain score, balance, proprioception and functional capabilities as well as a reduction in disability for light-resistance PA interventions. High-resistance PA programs showed these same benefits in all outcomes, except for proprioception and balance. Other frequent symptoms such as fatigue and kinesiophobia also improved following both types of resistance-based PA interventions. The current evidence for PA as a treatment for hEDS/G-HSD suggests that it can reduce the burden of many symptoms and mitigate disability.<br>
A survey was conducted in 186 Canadians with hEDS/G-HSD in which the median age of the sample was 42 and 88% identified as being a woman. Despite the benefits of PA, in a typical week, Canadians with hEDS/G-HSD underperformed PA, notably vigorous and muscle-strengthening activities. Barriers to PA were omnipresent, with the most common being symptoms, weather and<br>
a belief that PA makes symptoms worse; PA was most facilitated by support from family and friends. Total score for the Inflammatory Arthritis Facilitators and Barriers-derived questionnaire was strongly associated with duration of muscle-strengthening and moderate PAs in multivariate regression analyses, as well as the probability of participating in vigorous PA and meeting the Canadian Movement Guidelines in logistic regressions. Other important predictors were inability to work and the use of support aids, both reducing the likelihood and duration of PA participation.<br>
These results suggest that while PA can be beneficial for hEDS/G-HSD symptom management, it is poorly undertaken by people with hEDS/G-HSD. Barriers and facilitators have a strong role in predicting whether people with hEDS/G-HSD participate in PA; unfortunately, barriers to PA are widespread in this population. Recommending PAs in function of people’s barriers and facilitators can be crucial for the uptake and maintenance of PA, and nurturing health and wellbeing in<br>
individuals with hEDS/G-HSD.</p>