Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond
The Ehlers-Danlos Syndromes (EDS) are an underdiagnosed group of conditions with implications and risks associated with childbearing. Those with EDS suggest that health professionals lack of awareness in this area, and consequently describe delays in access to appropriate healthcare services. This article draws on the existing international evidence available to present evidence-based care considerations for childbearing women with hypermobile Ehlers-Danlos Syndrome (hEDS) throughout the antenatal, intrapartum and postnatal periods. Care considerations are also offered in relation to the care of the newborn infant. The management of hEDS in childbearing women and babies can be complex. Findings point to the need for a multidisciplinary approach to formulating individualised care plans in partnership with women. In understanding the evidence in relation to this issue, midwives will be better able to practice evidence-based and woman-centred care.
The Ehlers-Danlos Syndromes (EDS) are a group of multisystemic, inherited conditions that affect connective tissue (Malfait et al, 2017). The various subtypes of EDS can share symptoms such as joint hypermobility and hyperextensible and/or fragile skin (Bloom et al, 2017), yet many EDS subtypes also include clinical characteristics relating to pain, extreme fatigue, irritable bowel, sleep disturbance, depression, anxiety and other cardiovascular, gastrointestinal, orthopaedic, oromandibular, neurological, allergic/immunological, and psychological aspects of health (Tinkle et al, 2017). The prevalence of EDS was historically estimated to be 1 in 5000 for all subtypes (Beighton et al, 1998), although other work suggests a prevalence of 0.75-2% (Hakim and Sahota, 2006). There has been no high-quality prevalence study carried out since EDS received a major reclassification in 2017 (Tinkle et al, 2017).
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