Welcome to hEDSTogether!

This is the first blog to launch hEDSTogether.com and our newly co-created educational tools to support childbearing with hypermobile Ehlers Danlos syndrome (hEDS) and Hypermobility Spectrum Disorders (HSD).

The hEDSTogether team are passionate about inclusivity, working within multidisciplinary teams, engaging in patient and public involvement (PPI) activities and co-creation. From the beginning of our journey, we have joined in conversations with the childbearing and hEDS/HSD communities to ensure that we remained focussed on what matters most. We are now excited to take you with us further on our journey as we continue to engage with you via this blog and website.

So far, we have engaged the public in providing Top tips for caring for women with Hypermobile Ehlers-Danlos Syndrome in pregnancy and a ‘Pint of Science’ here and there. We have also provided videos on ‘How to test someone for hypermobility using the Beighton score’. Along with our research outputs, we hope these have been useful to those seeking to find out more on hEDS/HSD.

A lack of knowledge and awareness in healthcare professionals has been a recurring theme throughout our journey. Thus, the need for education has featured strongly. When we first began exploring ideas on which educational tools may be useful, we engaged in PPI activities such as online conversations and a rapid poll which drew over 1000 responses in relation to “Which educational tools would be most useful in helping maternity staff support childbearing women with hEDS/HSD“. These valued responses steered us toward the co-creation of educational tools to support those childbearing with hEDS/HSD. So, we are grateful to each and every person who took their time in participating.

We are also grateful to the EDS Maternity co-creation team who co-created these tools in partnership with us. These tools were launched officially on International day of the midwife (May 5th) during the year of the nurse and the midwife (2020). Co-incidentally, May is also Ehlers Danlos Syndromes and Hypermobility Spectrum Disorders awareness month. You can view the online launch of these tools along with our other GOLD Midwifery presentations here at the GOLD Online Education Midwifery Conference 2019/2020.

Citation: Pezaro, S., Pearce, G., & Magee, P. (2020). New Educational Tools to Support Childbearing With hypermobile Ehlers-Danlos syndrome and Hypermobility Spectrum Disorders. GOLD Online Midwifery Conference. May 5th.https://www.goldlearning.com/ce-library/all-lectures/new-educational-tools-detail

The final tools comprised:

  • An i-learn module launched by the Royal College of Midwives to their members
  • A maternity tool freely available for download and wider use
  • An infomercial to raise awareness and mobilise knowledge in relation childbearing with hEDS/HSD

We have made these tools freely available where possible. You can visit the project page to learn more about these tools. If you are using them to create an impact in the world, please tell us about it via our contact pages.

Together, we have been given high recognition for our work thus far,  for example, our team won a first prize award in ‘Leading and inspiring excellence in maternity care’ from the Royal Society of Medicine. Our work has also been rated ‘Highly Commended’ at the 2018 Real Impact awards by Emerald Publishing.

We look forward to taking you with us as we move onward in our journey. Let’s keep putting our #hEDSTogether to co-create research!

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