Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review

Buryk-Iggers, Stephanie; Mittal, Nimish; Mina, Daniel Santa; Adams, Scott C.; Englesakis, Marina; Rachinsky, Maxim; Lopez-Hernandez, Laura; Hussey, Laura; McGillis, Laura; McLean, Lianne; Laflamme, Camille; Rozenberg, Dmitry; Clarke, Hance

doi:10.1016/j.arrct.2022.100189

Cited by 10 publications

(6 citation statements)

References 68 publications

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“…In a review of exercise and rehabilitation studies of EDS, the results support the significant benefit for physical and psychological outcomes 5. Physical therapy (PT) and/or occupational therapy (OT) must be a priority in rehabilitation for SJH.…”

Section: Movementmentioning

confidence: 92%

“…In a review of exercise and rehabilitation studies of EDS, the results support the significant benefit for physical and psychological outcomes. 5 Physical therapy (PT) and/or occupational therapy (OT) must be a priority in rehabilitation for SJH. Various aspects of SJH, such as extreme (dangerous) range of motion, joint instability, dizziness, and exercise intolerance, require a unique approach to PT, focusing on stability throughout the entire body.…”

Section: Movementmentioning

confidence: 99%

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Hope for Hypermobility: Part 2—An Integrative Approach to Treating Symptomatic Joint Hypermobility

Daylor¹,

Gensemer²,

Norris³

et al. 2023

Topics in Pain Management

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designates this enduring material for a maximum of 1.5 AMA PRA Category 1 Credits™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. To earn CME credit, you must read the CME article and complete the quiz and evaluation assessment survey on the enclosed form, answering at least 70% of the quiz questions correctly. This CME activity expires on March 31, 2025. NCPD AccreditationLippincott Professional Development is accredited as a provider of nursing continuing professional development (NCPD) by the American Nurses Credentialing Center's Commission on Accreditation. Lippincott Professional Development will award 2.5 contact hours for this NCPD activity. This activity is also provider approved by the California Board of Registered Nursing, Provider Number CEP 11749 for 2.5 contact hours. Lippincott Professional Development is also an approved provider of continuing nursing education by the District of Columbia, Georgia, West Virginia, New Mexico, South Carolina, and Florida, CE Broker #50-1223. Your certificate is valid in all states. Instructions for earning ANCC contact hours are included on page 11 of the newsletter. This NCPD activity expires on March 6, 2026.

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Section: Movementmentioning

confidence: 92%

Section: Movementmentioning

confidence: 99%

Hope for Hypermobility: Part 2—An Integrative Approach to Treating Symptomatic Joint Hypermobility

Daylor¹,

Gensemer²,

Norris³

et al. 2023

Topics in Pain Management

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“…This is often attributed to improved physical fitness owing to exercise training, which increases the efficiency of the muscles and decreases the level of ventilatory demand [ 30 ]. Unlike other populations, research on the effects of exercise training on individuals with hEDS or G-HSD is in its early stages, with only 5 RCTs performed in this area to date [ 32 ]. Following rehabilitation, in patients with hEDS or G-HSD, improvements have been observed in exercise capacity, muscle strength, mood, HRQL, and performance of daily activities [ 32 ].…”

Section: Introductionmentioning

confidence: 99%

“…Unlike other populations, research on the effects of exercise training on individuals with hEDS or G-HSD is in its early stages, with only 5 RCTs performed in this area to date [ 32 ]. Following rehabilitation, in patients with hEDS or G-HSD, improvements have been observed in exercise capacity, muscle strength, mood, HRQL, and performance of daily activities [ 32 ].…”

Section: Introductionmentioning

confidence: 99%

Evaluation and Management of Dyspnea in Hypermobile Ehlers-Danlos Syndrome and Generalized Hypermobility Spectrum Disorder: Protocol for a Pilot and Feasibility Randomized Controlled Trial

Rozenberg¹,

Kaabi²,

Camacho³

et al. 2023

JMIR Res Protoc

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Background Dyspnea is a prevalent symptom in individuals with hypermobile Ehlers-Danlos Syndrome (hEDS) and generalized hypermobility spectrum disorder (G-HSD), yet its contributors have not been identified. One known contributor to dyspnea is respiratory muscle weakness. The feasibility and effectiveness of inspiratory muscle training (IMT) in combination with standard-of-care rehabilitation (aerobic, resistance, neuromuscular stabilization, and balance and proprioception exercises) in improving respiratory muscle strength and patient-reported outcomes in patients with hEDS or G-HSD have not been evaluated. Objective This study aims to evaluate dyspnea, respiratory muscle strength, and patient-reported outcome measures (PROMs) in hEDS or G-HSD compared with healthy controls and to assess the feasibility of a randomized controlled trial of IMT and standard-of-care rehabilitation for improving respiratory muscle strength, exercise capacity, and PROMs compared with standard-of-care rehabilitation in hEDS and G-HSD. Methods The study will include 34 participants with hEDS or G-HSD and 17 healthy, age- and sex-matched controls to compare respiratory muscle structure and function and PROMs. After baseline assessments, participants with hEDS or G-HSD will be randomized into the intervention group and provided IMT combined with Ehlers-Danlos Syndrome standard-of-care rehabilitation or into the usual care group, and provided only standard-of-care rehabilitation for 8 weeks. The intervention group will be prescribed IMT in their home environment using the POWERbreathe K5 IMT device (POWERbreathe International Ltd). IMT will comprise 2 daily sessions of 30 breaths for 5 days per week, with IMT progressing from 20% to 60% of the baseline maximal inspiratory pressure (MIP) over an 8-week period. Feasibility will be assessed through rates of recruitment, attrition, adherence, adverse events, and participant satisfaction. The primary pilot outcome is MIP change over an 8-week period in hEDS or G-HSD. Secondary outcomes will include the evaluation of dyspnea using Medical Research Council Scale and 18-point qualitative dyspnea descriptors; diaphragmatic thickening fraction using ultrasound; respiratory muscle endurance; pulmonary function; prefrontal cortical activity using functional near-infrared spectroscopy; aerobic capacity during cardiopulmonary exercise testing; quality of life using Short Form-36; and scores from the Depression, Anxiety, and Stress scale-21. These measures will also be performed once in healthy controls to compare normative values. Multivariable regression will be used to assess the contributors to dyspnea. Paired 2-tailed t tests will be used to assess the changes in MIP and secondary measures after 8 weeks of IMT. Results Study recruitment began in August 2021 and, with several disruptions owing to COVID-19, is expected to be completed by December 2023. Conclusions This study will provide a better understanding of the factors associated with dyspnea and the feasibility and effectiveness of IMT combined with standard-of-care rehabilitation. IMT may be a novel therapeutic strategy for improving respiratory muscle function and patient-reported outcomes in individuals with hEDS or G-HSD. Trial Registration ClinicalTrials.gov NCT04972565; https://clinicaltrials.gov/ct2/show/NCT04972565 International Registered Report Identifier (IRRID) DERR1-10.2196/44832

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“…The most common subtypes of EDS are classical, classical-like, hypermobile, cardio-valvular, and vascular creating a prevalence of one in 5,000 people worldwide [ 1 , 2 , 3 , 4 , 5 , 6 ]. Treatment for EDS is often limited to supportive measures with medications targeting pain, anti-inflammatory, and cardiovascular symptoms, as well as complications [ 7 , 8 , 9 , 10 ]. Osteopathic manipulative treatment (OMT) is a potential alternative in symptomatic relief for EDS patients; however, only a few case reports have documented OMT use in this population.…”

Section: Introductionmentioning

confidence: 99%

The Benefits of Osteopathic Manipulative Treatment on a Patient With Ehlers-Danlos Syndrome

Khokhar,

Powers,

Yamani

et al. 2023

Cureus

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Ehlers-Danlos syndrome (EDS) is a disorder affecting connective tissue throughout the body. Inherited through several different genetic mutations, the EDS symptoms of hyperextensibility, hypermobility, and fragility cause significant somatic and visceral issues in those affected. Chronic somatic dysfunction, pain, and systemic involvement create lifelong comorbidities and discomfort for these patients. One in every 5,000 individuals is burdened with EDS worldwide; in the US, the range has been reported to be 1/2,500-1/5,000 people. Very few patients with EDS in the literature have been documented and treated with osteopathic manipulative treatment (OMT). The objective of this case report is to describe the response of an EDS patient to outpatient OMT over a series of three office visits. The patient has verbally consented to OMT at each encounter. A combination of soft tissue manipulation, muscle energy, Still’s technique, counterstrain, and high-velocity low-amplitude (HVLA) was performed in the head and neck, thoracic, lumbar, ribs, and lower extremity regions. During the three clinic visits of this patient, OMT was performed in the same regions by the student physician under the supervision of the attending physician. At each visit, the patient was asked to report their pain levels pre- and post-treatment and assess symptom improvement using a one to 10 pain scale, as well as any subjective symptoms they are experiencing. Following each treatment, as well as at each follow-up encounter, the patient reported marked pain and symptom improvement. The objective of this case report is to describe the benefits that one patient experienced from three clinic visits. These results showed that subjective improvement in respiratory, gastrointestinal, and musculoskeletal symptoms secondary to the longstanding history of EDS may be possible through the use of OMT.

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Exercise and Rehabilitation in People With Ehlers-Danlos Syndrome: A Systematic Review

Cited by 10 publications

References 68 publications

Hope for Hypermobility: Part 2—An Integrative Approach to Treating Symptomatic Joint Hypermobility

Hope for Hypermobility: Part 2—An Integrative Approach to Treating Symptomatic Joint Hypermobility

Evaluation and Management of Dyspnea in Hypermobile Ehlers-Danlos Syndrome and Generalized Hypermobility Spectrum Disorder: Protocol for a Pilot and Feasibility Randomized Controlled Trial

The Benefits of Osteopathic Manipulative Treatment on a Patient With Ehlers-Danlos Syndrome

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