2023 Pregnancy in Vascular Ehlers-Danlos Syndrome (vEDS) The Sheffield Experience - Dr. Glenda Sobey

Dr. Glenda Sobey presents to attending healthcare professionals at the Genetically Defined EDS: Strategies & Solutions for Unmet Needs Hybrid Meeting, August 30-31, 2023, in Ghent, Belgium.
Dr. Glenda J Sobey is co-founder and head of the UK Ehlers-Danlos Syndrome National Diagnostic Service in Sheffield. Her unit is responsible for the diagnosis of the genetically defined types of EDS. This includes specialist clinical evaluation, skin biopsy with electron microscopy, and molecular genetic testing for all known EDS genes in the Sheffield laboratory. This service acts as a full clinical genetics service including genetic counseling. In addition, her team advises on and coordinates the management of this group of patients.
Since 2011, together with cardiology colleagues, she established and runs a specialist Vascular EDS Cardiology Clinic. The team cares for more than 200 patients with vEDS and has just published a completed analysis of twelve years of medical management including the beneficial use of oral medications in this group. pubmed.ncbi.nl...

[@lizturner267]

As I wasn’t genetically diagnosed with vEDS until 55, my pregnancies should have been a clue. Lost my first pregnancy at 16 weeks (no cause known then). Delivered my daughter vaginally at 36 weeks, I had an episiotomy that wouldn’t hold sutures and bled out with many transfusions. At 28 weeks pregnant with my son, I ruptured and had an immediate C-section. My son spent months in the NICU. He has been diagnosed vEDS too.
I’m so glad that diagnosis happens sooner now. Thankyou for educating others.

[@melissafarrugia9531]

I’m thinking that perhaps vascular Ehlers Danlos can have a longer fetal /umbilical cord.
All I know is my second Son had it doubled round his neck not sure if that’s a vEDS occurrence sometimes