Vascular EDS is the “scary” type of EDS. The fragility of the connective tissue particularly affects the vasculature, meaning arteries and “hollow organs” can tear. Average life expectancy is at least 20 years lower than for healthy people, and people with vEDS need to be much more vigilant about any new symptoms they have, and to be closely monitored. It’s absolutely critical that they are diagnosed so that they can have a care team able to watch for and treat life threatening events.

vEDS is much rarer than the kind of EDS I have; vEDS affects maybe 1 in 50,000 people, while hEDS (my type) affects somewhere between 1 in 500 to 1 in 5,000 people.

Today is vEDS awareness, with “wear red for vEDS”. Here’s my red (ok, burgundy) shirt with my loom in the background!

@ehlers.danlos

#hEDS

#EDS

#invisibleillness

#invisibledisability

#edsawareness

#ehlersdanlossyndrome

#ehlersdanlos

#hypermobilityspectrumdisorders