Hypermobile Ehlers-Danlos Syndrome during

pregnancy, birth and beyond

Northern Maternity and Midwifery Festival 2019

Twitter: @SallyPezaro Blog: https://sallypezaro.wordpress.com/ Facebook: The Academic Midwife

@DrEReinhold @GemmaSPearce @SallyPezaro

#EDSMaternity

14,000+ downloads

Pezaro, Sally, Gemma Pearce, and Emma Reinhold. "Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond." British Journal of Midwifery 26.4 (2018): 217-223.

@SallyPezaro @DrEReinhold @GemmaSPearce

“I'm showing this to my GP tomorrow. It's the first time since the birth of my daughter and diagnosis 5 years ago that I've felt it possible to consider having the 2nd child I've longed for! I didn't have the knowledge to advocate for proper care, now I do, thanks to new research.”

“I think this paper has made a huge difference as my daughter was able to take this with her into hospital to support her birth plan. She had a major haemorrhage and extensive tearing plus multiple other complications. She was taken very seriously by midwives and obstetricians. Thanks so much”

Your article was really helpful when it came to getting my community mw to actually listen to my needs :) Baby is

now nearly a week old!

“It enabled more sensitive care and a timely and appropriate

referral to the pain team. I printed it off to share with

colleagues including student midwives to learn from.”

I gave this to my consultant when I

was pregnant earlier in the year. The

article was put in the front of my notes and

I think it definitely helped with my

care 👍🏻

As an EDS patient and a Midwife I’d say this guidance has been long overdue. 👍🏻

"I remember him [junior rheumatologist] saying, you’re not hypermobile because

you can’t touch the floor, and I’m thinking I’m eight months pregnant of

course I can’t touch the floor."

“it was refreshing when I saw the anaesthetist and he was aware of EDS. He listened, and it was like a weight had been lifted off me. . . he told me that so many of us with EDS are so used to being not believed.”

“I didn't have any other children because I was too scared “

The lived experience…

Funded future plans

• X2 International surveys informed by 4000+ votes on ‘what matters most’

• Knowledge mobilisation meet ups with key stakeholders & organisations (like yourselves) to develop ideas and co-produce great things together

• Public engagement events • Co-create educational tools • The publication of new estimated prevalence rates & key findings

How can you help?

*CALLING ALL MATERNITY STAFF* (anyone who provides clinical care to childbearing women) in the UK, USA, Ireland, Australia, Canada & New Zealand

Please complete & share this survey👉http://bit.ly/EDSMaternityStaffSurvey

**No experience necessary**

Pezaro, S; Pearce, G; Reinhold, E (2018) Hypermobile Ehlers-Danlos Syndrome during pregnancy, birth and beyond: British Journal of Midwifery, April 2018, Vol 26, No 4. 217-223.

• Sally.Pezaro@Coventry.ac.uk

• Gemma.Pearce@Coventry.ac.uk

• e.reinhold@doctors.org.uk

• RCGP’s EDS Toolkit - https://www.rcgp.org.uk/eds

SURVEY LINK: http://bit.ly/EDSMaternityStaffSurvey