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"When I walk away from my chair, bystanders sometimes act like they’ve either witnessed a miracle or caught me in a lie...Each of these troubling incidents is worth the moments with my son that my chair facilitates." https://nyti.ms/2EBPbPf
#EDS#VEDS#Marfansyndrome#LoeysDietzPrikaži ovu nit -
“It’s such a collection of things you wouldn’t necessarily put together, so we often get misdiagnosed,” she says. “At one stage I was speaking to 5 different specialists who knew nothing about the disorder.” http://bit.ly/2CdRrew
#VEDS#VascularEhlersDanlos#vascularEDS#rare -
Acer Therapeutics' announced publication of long-term data from a cohort of COL3A1-positive
#Vascular Ehlers-Danlos Syndrome (#vEDS) patients in the Journal of the American College of#Cardiology.https://buff.ly/2v9eYK2 -
#vascularEDS should be considered in the differential diagnosis of spontaneous#pneumothorax and#hemothorax in a young individual.#vEDS#RareDiseases@UWSurgery@UWVascsurg https://www.ncbi.nlm.nih.gov/pubmed/30793832 pic.twitter.com/pHo5dR1omD
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We are incredibly saddened to hear of Dawn's passing from vascular EDS on Christmas Day. Our thoughts are with her family at this time. https://www.dailymail.co.uk/news/article-6540027/Mother-two-dies-suddenly-Christmas-Day-falling-ill.html …
#EDS#vEDS#vascularEDS -
Vascular Ehlers-Danlos syndrome has been featured on
@InsideOutWest this week. Watch from 11 mins 17 secs to view the story of 25-year old Caroline Prentice living positively with vascular EDS despite losing her sister and two brothers to#vEDS. https://www.bbc.co.uk/programmes/b0blvbfs …pic.twitter.com/d4YDMlewgT
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Heart disease is the leading cause of maternal death in the UK
#mums#pregnancy#veds http://dailym.ai/2sLhiUw -
Many thanks to
@thismorning for giving Craig & Carla the platform to raise awareness of#vEDS http://www.itv.com/thismorning/hot-topics/we-were-falsely-accused-of-shaking-our-baby-and-missed-eight-months-of-her-life …#EDSawarenessmonth -
BBC News - Scientists make 'second skin' to hide wrinkles http://www.bbc.co.uk/news/health-36245728 … .
@AJsChallenge could protect fragile#veds#skin !? -
Wear red pants tomorrow
#WhatIsEDS#VEDS#EhlersDanlosSyndrome http://www.philly.com/philly/blogs/thinktank/Red-pants-in-honor-of-Mike.html … PLEASE SPREAD THIS -
Spontaneous Carotid-Cavernous Fistula in the TypeIV Ehlers-Danlos Syndrome http://buff.ly/1o7ppo2
#VascularEDS#VEDS pic.twitter.com/SCVh7HaZfV
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