A clinical update on hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond

Pezaro, Sally; Pearce, Gemma; Reinhold, Emma

doi:10.12968/bjom.2021.29.9.492

Cited by 4 publications

(30 citation statements)

References 67 publications

(124 reference statements)

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“…The most common type is hEDS, but hypermobility spectrum disorders (HSD) that encompass patients who do not qualify for a diagnosis of hEDS are also common among patients with POTS. 36 , 37 The prevalence of hEDS/HSD in POTS is high, with reports of 31% of POTS patients meeting the criteria for hEDS and a further 24% for non-hEDS generalized joint hypermobility. 36 , 37 Both hEDS and HSD can complicate pregnancy and need to be considered in pregnant women with POTS and EDS/HSD.…”

Section: Resultsmentioning

confidence: 99%

“… 36 , 37 The prevalence of hEDS/HSD in POTS is high, with reports of 31% of POTS patients meeting the criteria for hEDS and a further 24% for non-hEDS generalized joint hypermobility. 36 , 37 Both hEDS and HSD can complicate pregnancy and need to be considered in pregnant women with POTS and EDS/HSD. Early consultation with a multidisciplinary team is encouraged to support and manage pregnant women with POTS and hEDS/HSD.…”

Section: Resultsmentioning

confidence: 99%

“…Hormonal changes during pregnancy can exacerbate hEDS/HSD symptoms and increase maternal and fetal risks during pregnancy, labor and delivery. 36 …”

Section: Resultsmentioning

confidence: 99%

“…Pelvic girdle pain is common, and in some severe cases may result in women utilizing wheelchairs for mobility. 25 , 36 Other symptoms during pregnancy include back pain, heartburn, headache, heart palpitations, varicosities, edema, tinnitus, sleep disturbance, nausea, and vomiting. Regular early physiotherapy is recommended to aid in joint strengthening, stability, and pain relief.…”

Section: Resultsmentioning

confidence: 99%

“…Regular early physiotherapy is recommended to aid in joint strengthening, stability, and pain relief. 25 , 36 …”

Section: Resultsmentioning

confidence: 99%

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POTS and Pregnancy: A Review of Literature and Recommendations for Evaluation and Treatment

Morgan

Smith

Blitshteyn

2022

IJWH

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Postural Orthostatic Tachycardia Syndrome (POTS) is a disorder of the autonomic nervous system most commonly affecting women of reproductive age. Studies on POTS and pregnancy are limited, and there is a lack of clinical guidelines regarding assessment and management of pregnant women with POTS. The purpose of this review is to summarize data from the available studies on the topic of pregnancy in POTS and common comorbid conditions and to provide the clinical recommendations regarding evaluation and treatment of POTS in pregnant women, based on the available studies and clinical experience. We conclude that pregnancy appears to be safe for women with POTS and is best managed by a multi-disciplinary team with knowledge of POTS and its various comorbidities. Importantly, large, prospective studies are needed to better delineate the course and outcomes of pregnancy, as well as possible pregnancy-related complications in women with POTS. Clinicians should be aware of the clinical presentation, diagnostic criteria, and treatment options in pregnant women with POTS to optimize outcomes and improve medical care during pregnancy and post-partum period.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…Hormonal changes during pregnancy can exacerbate hEDS/HSD symptoms and increase maternal and fetal risks during pregnancy, labor and delivery. 36 …”

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…Regular early physiotherapy is recommended to aid in joint strengthening, stability, and pain relief. 25 , 36 …”

Section: Resultsmentioning

confidence: 99%

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POTS and Pregnancy: A Review of Literature and Recommendations for Evaluation and Treatment

Morgan

Smith

Blitshteyn

2022

IJWH

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Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines

Pezaro,

Brock,

Buckley

et al. 2024

PLoS ONE

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Objective To co-create expert guidelines for the management of pregnancy, birth, and postpartum recovery in the context of hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD). Design Scoping Review and Expert Co-creation. Setting United Kingdom, United States of America, Canada, France, Sweden, Luxembourg, Germany, Italy, and the Netherlands. Sample Co-creators (n = 15) included expertise from patients and clinicians from the International Consortium on the Ehlers-Danlos syndromes and Hypermobility Spectrum Disorders, facilitated by the Ehlers-Danlos Society. Methods A scoping review using Embase, Medline, the Cochrane Central Register of Controlled Trials and CINHAL was conducted from May 2022 to September 2023. Articles were included if they reported primary research findings in relation to childbearing with hEDS/HSD, including case reports. No language limitations were placed on our search, and our team had the ability to translate and screen articles retrieved in English, French, Spanish, Italian, Russian, Swedish, Norwegian, Dutch, Danish, German, and Portuguese. The Mixed Methods Appraisal Tool was used to assess bias and quality appraise articles selected. The co-creation of guidelines was based on descriptive evidence synthesis along with practical and clinical experience supported by patient and public involvement activities. Results Primary research studies (n = 14) and case studies (n = 21) including a total of 1,260,317 participants informed the co-creation of guidelines in four overarching categories: 1) Preconceptual: conception and screening, 2) Antenatal: risk assessment, management of miscarriage and termination of pregnancy, gastrointestinal issues and mobility, 3) Intrapartum: risk assessment, birth choices (mode of birth and intended place of birth), mobility in labor and anesthesia, and 4) Postpartum: wound healing, pelvic health, care of the newborn and infant feeding. Guidelines were also included in relation to pain management, mental health, nutrition and the common co-morbidities of postural orthostatic tachycardia syndrome, other forms of dysautonomia, and mast cell diseases. Conclusions There is limited high quality evidence available. Individualized strategies are proposed for the management of childbearing people with hEDS/HSD throughout pregnancy, birth, and the postpartum period. A multidisciplinary approach is advised to address frequently seen issues in this population such as tissue fragility, joint hypermobility, and pain, as well as common comorbidities, including dysautonomia and mast cell diseases.

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Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

Pearce,

Bell,

Magee

et al. 2023

IJERPH

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Individuals living with hypermobile Ehlers-Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD) have reported feeling discredited and unsupported by healthcare professionals. However, the level of knowledge about hEDS/HSD among maternity staff remains unknown. Informed by patient and public involvement, this research aimed to investigate maternity staff’s knowledge and confidence in supporting people with hEDS/HSD, examine people with hEDS/HSD’s experiences of perinatal care, and co-create tools to help maternity staff support people childbearing with hEDS/HSD. Two online mixed-methods international surveys were completed by childbearing people with hEDS/HSD (N = 955) and maternity staff (N = 307). This was followed by the co-creation of three tools with 17 co-creators and a design team. Two main qualitative themes were identified through thematic analysis: (1) a need for recognition of hEDS/HSD in perinatal care and (2) the delivery of appropriate individualised perinatal care. Quantitatively, people with hEDS/HSD perceived maternity professionals to have a low level of knowledge about the conditions. Respectively, maternity staff reported low levels of confidence in supporting people with hEDS/HSD. The co-created tools provide applicable outputs for both education and practice and include an i-learn module hosted by the Royal College of Midwives, a tool for perinatal records, and infomercials.

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A clinical update on hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond

Cited by 4 publications

References 67 publications

POTS and Pregnancy: A Review of Literature and Recommendations for Evaluation and Treatment

POTS and Pregnancy: A Review of Literature and Recommendations for Evaluation and Treatment

Management of childbearing with hypermobile Ehlers-Danlos syndrome and hypermobility spectrum disorders: A scoping review and expert co-creation of evidence-based clinical guidelines

Co-Created Solutions for Perinatal Professionals and Childbearing Needs for People with Hypermobile Ehlers-Danlos Syndrome and Hypermobility Spectrum Disorders

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