A QUALITATIVE REVIEW OF LIVING WITH HYPERMOBILE EDS

Sætre, E., & Eik, H. (2019). Flexible bodies—Restricted lives: A qualitative exploratory study of embodiment in living with joint hypermobility syndrome/Ehlers‐Danlos syndrome, hypermobility type. Musculoskeletal Care, 17(3), 241–248. Portico.

This study evaluated the quality of life of patients with hEDS through detailed interviews. They found that all participants noticed their hypermobility from a young age, sharing that others found their bodies "strange." They shared common features of pain and fatigue from daily tasks. Finally, the participants described their bodies and related symptoms in negative terms (frustration, anger, grief, and distress). This study involved only 7 Norwegian participants as a way to demonstrate a need for further research in the quality of life of EDSers.

Summary by Kimberly Czotter

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PREDICTING PAIN AND MOBILITY-RELATED DISABILITY IN HEDS

Kalisch, L., Hamonet, C., Bourdon, C., Montalescot, L., de Cazotte, C., & Baeza-Velasco, C. (2019). Predictors of pain and mobility disability in the hypermobile Ehlers-Danlos syndrome. Disability and Rehabilitation, 42(25), 3679–3686.

This study interviewed 75 Parisian adults with hEDS and quality of life regarding psychological, health (pain, fatigue, diagnostic delay, BMI, mobility disability) and socio-demographics. They found that 43% suffer from severe pain and that 66% have a high level mobility disability. From this, they demonstrate that diagnostic delay, working, and thoughts of helplessness increased the incidence of severe pain. Age, fatigue, and BMI served as predictors of mobility disability. This study confirms research that found a high disease burden in hEDS patients, and the authors suggest multidisciplinary health management: nutritional, psychological, and physical.

Summary by Kimberly Czotter

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CHRONIC FATIGUE IN HEDS

" Hakim, A., De Wandele, I., O’Callaghan, C., Pocinki, A., & Rowe, P. (2017). Chronic fatigue in Ehlers-Danlos syndrome-Hypermobile type. American Journal of Medical Genetics Part C: Seminars in Medical Genetics, 175(1), 175–180. Portico. "

The authors reviewed various studies concerning Hypermobile Ehlers-Danlos Syndrome and chronic fatigue syndrome (CFS). They argue that hEDS and CFS have overlapping symptoms as many hEDS-related problems commonly contribute to fatigue: sleep disorders, chronic pain, deconditioning, cardiovascular autonomic dysfunction, bowel and bladder dysfunction, psychological issues, and nutritional deﬁciencies. They argue for ongoing medical evaluation and discuss different treatment options such as medication, physical therapy, maintaining function and providing social, physical, and nutritional support

Summary by Kimberly Czotter

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MANAGING PAIN AND FATIGUE IN HEDS

Castori, M., Morlino, S., Celletti, C., Celli, M., Morrone, A., Colombi, M., Camerota, F., & Grammatico, P. (2012). Management of pain and fatigue in the joint hypermobility syndrome (a.k.a. Ehlers-Danlos syndrome, hypermobility type): Principles and proposal for a multidisciplinary approach. American Journal of Medical Genetics Part A, 158A(8), 2055–2070.

The authors discuss hypermobile Ehlers–Danlos syndrome (hEDS) [diagnosed using outdated criteria] and its related chronic fatigue and pain: articular, chronic, muscular, neuropathic, back, neck, abdominal, pelvic, and headache. The authors suggest that fatigue may stem from muscle weakness, respiratory insufﬁciency, unrefreshing sleep, dysautonomia, intestinal malabsorption, reactive depression/anxiety, and excessive use of analgesics. They discuss the benefits of various treatments including lifestyle changes, physiotherapy and medication.

Summary by Kimberly Czotter

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CHRONIC PAIN IN HSD AND HEDS

Scheper, M., de Vries, J. E., Verbunt, J., & Engelbert, R. H. H. (2015). Chronic pain in hypermobility syndrome and Ehlers-Danlos syndrome (hypermobility type): it is a challenge. Journal of Pain Research, 591.

The authors explore chronic pain in relation to hEDS and HSD. They identify three major challenges of research and care in this population: there is a diverse clinical presentation, there is a lack of understanding regarding the development of chronic pain, and that these patients have a high prevalence of psychosocial factors affecting their health. They offer solutions to these challenges. *Uses outdated hEDS diagnostic criteria*

Summary by Kimberly Czotter

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LIFE QUALITY IN EDS

Berglund, B., Pettersson, C., Pigg, M., & Kristiansson, P. (2015). Self-reported quality of life, anxiety and depression in individuals with Ehlers-Danlos syndrome (EDS): a questionnaire study. BMC Musculoskeletal Disorders, 16(1).

This study evaluates the incidence of anxiety and quality of life of individuals with Ehlers Danlos Syndrome living in Sweden through use of a survey. They had 250 responses, and used two validated questionnaires: the Hospital Anxiety and Depression Scale (HADS) and SF-36, They found that participants had high prevalence of anxiety (74.8%) which correlated with age, tiredness and back pain. The EDS group also showed higher rates of depression and a significantly lower quality of health than the general population.

Summary by Kimberly Czotter

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DISABILITY PREVALENCE IN HYPERMOBILITY

Scheper, M. C., Juul-Kristensen, B., Rombaut, L., Rameckers, E. A., Verbunt, J., & Engelbert, R. H. (2016). Disability in Adolescents and Adults Diagnosed With Hypermobility-Related Disorders: A Meta-Analysis. Archives of Physical Medicine and Rehabilitation, 97(12), 2174–2187.

The authors tried to establish the most common symptoms related to disability in Hypermobile Ehlers-Danlos Syndrome (hEDS) by conducting a meta-analysis on 21/714 available publications. They also communicated the effectiveness of treatments for hEDS patients, but could not determine whether treatments were able to effectively reduce disability. *Uses outdated hEDS diagnostic criteria *

Summary by Kimberly Czotter

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EMPLOYMENT AND HEDS

De Baets, S., Calders, P., Verhoost, L., Coussens, M., Dewandele, I., Malfait, F., Vanderstraeten, G., Van Hove, G., & Van de Velde, D. (2019). Patient perspectives on employment participation in the “hypermobile Ehlers–Danlos syndrome.” Disability and Rehabilitation, 43(5), 668–677.

The study explored the employment experiences of nine patients with hEDS through purposive interviews. They found three major themes: (1) elements assisting employment, (2) limitations in employment, and (3) unemployment due to hEDS.They found that hEDS patients worried about work pressure, tasks, and transportation; but that employment also had positive effects on mental health.

Summary by Kimberly Czotter

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SUICIDALITY AND HEDS

Baeza-Velasco, C., Hamonet, C., Montalescot, L., & Courtet, P. (2021). Suicidal Behaviors in Women With the Hypermobile Ehlers–Danlos Syndrome. Archives of Suicide Research, 1–13. https://doi.org/10.1080/13811118.2021.1885538

The authors interviewed 35 women with hEDS regarding their pain, BMI, diagnostic delay, psychosocial variables, and suicidal behaviours. They found that there is a high frequency of suicide-related behaviours in this group - likely related to chronic pain, disability, and psychological stress.

Summary by Kimberly Czotter

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HEDS AND HSD: PSYCHOLOGICAL IMPACTS

Bulbena‐Cabré, A., Baeza‐Velasco, C., Rosado‐Figuerola, S., & Bulbena, A. (2021). Updates on the psychological and psychiatric aspects of the Ehlers–Danlos syndromes and hypermobility spectrum disorders. American Journal of Medical Genetics Part C: Seminars in Medical Genetics. Portico. https://doi.org/10.1002/ajmg.c.31955

This literature review evaluates articles regarding the psychopathological conditions associated with EDS, and EDS symptoms in psychiatric conditions. It confirms that EDS-related psychological processes (ex fear, distress, negative emotions) significantly impact patient outcomes. They found systemic associations between anxiety disorders and EDS and correlations with neurodevelopmental, eating, mood, and sleep disorders.

Summary by Kimberly Czotter

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USING PAIN DRAWING TO DIAGNOSE EDS AND GBS

Wester, L., Mücke, M., Bender, T. T. A., Sellin, J., Klawonn, F., Conrad, R., & Szczypien, N. (2020). Pain drawings as a diagnostic tool for the differentiation between two pain-associated rare diseases (Ehlers-Danlos-Syndrome, Guillain-Barré-Syndrome). Orphanet Journal of Rare Diseases, 15(1). https://doi.org/10.1186/s13023-020-01542-1

This prospective study evaluated 92 patients with EDS (60) or Guillain-Barré Syndrome (32). They aimed to understand whether pain drawings on a map of the human body could help differentiate the diagnosis between EDS and GBS. They found that the patients marked different areas, leading to high diagnostic accuracy in both groups.

Summary by Kimberly Czotter

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PSYCHOLOGICAL IMPACTS OF HSD AND hEDS

Bennett, S. E., Walsh, N., Moss, T., & Palmer, S. (2019). Understanding the psychosocial impact of joint hypermobility syndrome and Ehlers–Danlos syndrome hypermobility type: a qualitative interview study. Disability and Rehabilitation, 43(6), 795–804. https://doi.org/10.1080/09638288.2019.1641848

The authors conducted 17 interviews (14 women, 3 men) to better understand psychosocial factors in HSD and hEDS. They examined lived experiences and effective coping. They found five key themes: a restricted life, healthcare limitations, a lack of awareness among healthcare professionals, social stigma, fear of the unknown, and coping methods. They found that participants had shame, guilt, difficulties with romantic relationships, and difficulty finding reliable information.

Summary by Kimberly Czotter

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CHRONIC PAIN AND HYPERMOBILITY

Scheper, M., de Vries, J. E., Verbunt, J., & Engelbert, R. H. H. (2015). Chronic pain in hypermobility syndrome and Ehlers-Danlos syndrome (hypermobility type): it is a challenge. Journal of Pain Research, 591. https://doi.org/10.2147/jpr.s64251

EDS diagnoses are often overlooked and often not even considered due to lack of awareness and the absence of objective diagnostic markers leaving patients to search for years within the medical system before a diagnosis is established. This article presents suggestions for creating a standardized diagnostic criteria.

Summary by Jennifer Stacy

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Newly Diagnosed Resources

CHRONIC ILLNESS AND DISABILITY

KNOWLEDGE

LIFESTYLE TIPS

SUPPORTS IN CANADA

EHLERS-DANLOS AND HYPERMOBILITY

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

POTS AND DYSAUTONOMIA

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

MAST CELL RELATED DISORDERS

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

GASTROPARESIS

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

TUBE FEEDING FUNDING

MEDIAN ARCUATE LIGAMENT SYNDROME

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

TUBE FEEDING FUNDING

CSF LEAKS

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

CHIARI MALFORMATION

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

CRANIOCERVICAL INSTABILITY

KNOWLEDGE

LIFESTYLE TIPS

TREATMENTS

ACCURATE DIAGNOSIS

Resources gathered and webpage designed by Kimberly Czotter. Last updated Feb 28, 2022.