Through our patient and public involvement activities, we observed that many women with hEDS/HSD were communicating with us about how their childbearing experiences were impacting upon their existing symptoms in relation to hEDS/HSD and vice versa.
As hEDS/HSD affects connective tissue throughout the body, this was not wholly surprising to us, because the hormones of pregnancy already play a key factor in preparing smooth muscle and connective tissues to grow and birth a baby. Therefore, it seemed logical that there would be unique outcomes for those childbearing in this context.
Those with hEDS/HSD also suggested to us that health professionals can lack of awareness in this area. For these reasons, we conducted this literature review to explore and draw on the existing international evidence available to present evidence-based care considerations for those childbearing with hEDS/HSD throughout the antenatal, intrapartum and postnatal periods.
We hoped this review would be useful for both healthcare professionals and those childbearing with hEDS/HSD. Indeed, following publication, many professionals and those with experience of childbearing in this context shared stories with us about how this review had made a positive impact upon their lives. Consequently, this work was rated as being ‘Highly Commended’ by the 2018 Real Impact awards. It remains the British journal of Midwifery’s most widely read article and in the top 5% of all research outputs scored by Altmetric
You can read this review free of charge here: Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond
Pezaro, S., Pearce, G., & Reinhold, E. (2018). Hypermobile Ehlers-Danlos syndrome during pregnancy, birth and beyond. British Journal of Midwifery, 26 (4), 217-223
Gemma is the lead for the hEDS together website, involved in all of the featured research projects and has hEDS/HSD herself.
Sally has a passion for driving and leading excellence in maternity services. She also relishes the challenge of turning visions into impactful practice.
Emma spearheaded the RCGP #EDSToolkit project. She is passionate about improving all aspects of the patient experience in hEDS/HSD through research and policy work.
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