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EDS and Co-morbidities Research

5 total studies as of March 2, 2022

STUDIES APPEAR IN ORDER FROM OLDEST TO NEWEST ADDED

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EDS AND CSF LEAKS
EDS, MCAS AND POTS
EDS AND POTS

EDS and CSF Leaks

CONNECTIVE TISSUES AND SPONTANEOUS CSF LEAKS

Reinstein, E., Pariani, M., Bannykh, S., Rimoin, D. L., & Schievink, W. I. (2012). Connective tissue spectrum abnormalities associated with spontaneous cerebrospinal fluid leaks: a prospective study. European Journal of Human Genetics, 21(4), 386–390. https://doi.org/10.1038/ejhg.2012.191

The patients studied 50 patients with CSF leaks to assess the frequency of connective tissue disorders. Of these patients, only 9 had a connective tissue (EDS, Marfan's) and that for 7 of them there was a spontaneous leak. Based on this cohort, the authors concluded that spontaneous CSF leaks were associated with connective tissue disorders, suggesting that those with CSF leaks should be screened for EDS and Marfan's.

Summary by Kimberly Czotter

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EDS, MCAS, and PoTS

RELATIONSHIP BETWEEN hEDS, POTS, AND MCAS

Kohn, A., & Chang, C. (2019). The Relationship Between Hypermobile Ehlers-Danlos Syndrome (hEDS), Postural Orthostatic Tachycardia Syndrome (POTS), and Mast Cell Activation Syndrome (MCAS). Clinical Reviews in Allergy & Immunology, 58(3), 273–297. https://doi.org/10.1007/s12016-019-08755-8

The authors conducted a meta-analysis of 11 original research articles to demonstrate the relationship between MCAS, PoTS, and EDS. They found that many MCAS and hEDS studies did not adhere to the most recent diagnostic criteria. They suggest that their review demonstrates there is a lack of evidence to confirm an association and that more research is needed.

Summary by Kimberly Czotter

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EDS and PoTS

A RELATIONSHIP BETWEEN EDS AND POTS

Wallman, D., Weinberg, J., & Hohler, A. D. (2014). Ehlers–Danlos Syndrome and Postural Tachycardia Syndrome: A relationship study. Journal of the Neurological Sciences, 340(1–2), 99–102. https://doi.org/10.1016/j.jns.2014.03.002

This study evaluated the relationship between POTS and EDS by reviewing the medical records of 39 POTS patients (36F, 3M). They found that 18% of these patients had EDS which was a statistically significant difference from the EDS prevalence in the general population (~0.02%). They also evaluated 70 patients (53F, 17M) with autonomic dysfunction that was not POTS, finding that 4% of them had EDS - also a statistically significant difference.

Summary by Kimberly Czotter

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DIETARY INTERVENTION FOR POTS AND HSD

Do, T., Diamond, S., Green, C., & Warren, M. (2021). Nutritional Implications of Patients with Dysautonomia and Hypermobility Syndromes. Current nutrition reports, 10(4), 324–333. https://doi.org/10.1007/s13668-021-00373-1

"This review investigates dietary interventions that have helped reduce symptoms and improve quality of life within patients with POTS, hypermobility, and hEDS. They discuss demographics, symptom overlap, GI symptoms, and nutritional management. They argue that evidence suggests including probiotic and prebiotic-rich foods, fiber supplementation, salt, high fluid intake, and supplement use. "

Summary by Kimberly Czotter

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OCCUPATIONAL THERAPY WITH EDS AND POTS PATIENTS

Levine, D., Work, B., McDonald, S., Harty, N., Mabe, C., Powell, A., & Sanford, G. (2021). Occupational Therapy Interventions for Clients with Ehlers-Danlos Syndrome (EDS) in the Presence of Postural Orthostatic Tachycardia Syndrome (POTS). Occupational Therapy In Health Care, 1–18. https://doi.org/10.1080/07380577.2021.1975200

The authors discuss occupational therapy to treat patients with EDS and PoTS to improve their well-being, symptoms, employability, participation in daily life, and improve overall quality of life. These interventions include environmental modifications, adaptive equipment, orthoses, exercises, pacing/energy conservation, sleep routines, and habit development.

Summary by Kimberly Czotter

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Resources gathered and webpage designed by Kimberly Czotter. Last updated Oct 9, 2022.

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