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Today we officially launched the newly formed vEDS UK Steering Group! Our CEO Jared Griffin along with Christina Cooper, Patient Coordinator met the new team of vEDS stakeholders who are directly touched by
#vascularEDS in Birmingham. pic.twitter.com/0fc48VoYKE
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There are several studies currently enrolling patients with
#VEDS, including the@vEDSCollabo Natural History Study. Participating in a study is an important personal decision. What should you know before you make your decision? https://bit.ly/38KYglQ#VascularEDS -
Happy 4th! The
#vEDS Research Collaborative Study is actively enrolling! Those 18+ w/vEDS can help by participating in this study! Click http://vedscollaborative.org/get-involved to learn more, and help us reach as many individuals with#vascularEDS as possible by retweeting!@ShereneShalhub -
Today would’ve been Andie’s 21st birthday sadly she passed away on Jan 31st from
#VascularEDS. Today people all over the world are raising a glass to her. Happy Birthday, Andie, from all of us at the Comorbidity Coalition &@TheEDSociety#adventuresinlove4Andiepic.twitter.com/4NVOhTc7Yz
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July 31-August 2, 2020, will see our first
#vascularEDS (#vEDS) family weekend, partnering with@CampJoyOhio in Cincinnati, USA! The Ehlers-Danlos Society has secured a grant to fund those in the community with a “pay what you can afford” program. https://buff.ly/2A0aPdS pic.twitter.com/PlWEL6Li34
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Today is
#REDS4VEDS, an awareness day for rarest &most severe of 13types of#EhlersDanlosSyndrome -#VascularEDS. Learn signs &RT posts 2save a life. • Facial features: prominent eyes, thin lips &nose, attached earlobes, translucent skin • Varicose veins • Organ rupture/tears pic.twitter.com/aZYKuSdag0
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#VEDS affects both men and women of all races and ethnic groups. The best estimates suggest about 1 in 40,000-50,000 people are affected, but many people do not know they have#VascularEDS#VEDSFastFactshttps://bit.ly/2uAz6rv -
On way back down to London, busy week ahead for
@AJsChallenge#vascularEDS pic.twitter.com/PecnEJmenl
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𝙇𝙤𝙤𝙠𝙞𝙣𝙜 𝙗𝙖𝙘𝙠 𝙖𝙩 2019 With the charity
@AJsChallenge, we also funded a project at the EDS National Diagnostic Service at Northwick Park Hospital, London to create one of the largest#vascularEDS research databases in the world. -
Back to London ahead of tomorrow’s busy day of meetings & presentations.
#vascularEDS#charitypic.twitter.com/m4luH6Qpp9
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Thank you for tuning into the
@vEDSCollabo webinar! We hope as many people as possible affected by#vEDS will watch it before our August 4th meeting. We will provide details once the recording is posted!#vascularEDS@ShereneShalhub -
Sadly we have lost another young woman from
#VascularEDS.
My condolences to family and friends.
R.I.P Dawn 
https://twitter.com/AJsChallenge/status/1079517905828618242 … -
#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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For
#AorticDiseaseAwarenessDay2019 I am re-sharing the first episode of Staying Connected, a podcast of stories with#vascularEDS or#vEDS. Bridgette needed 12 surgeries following an angiogram which ruptured arteries, including her aorta.https://translucentone.blog/2018/04/29/staying-connected-episode-1-bridgette/ … -
#RareDiseaseDay vEDS here#EhlersDanlosSyndrome#vasculareds I wish it were rarer, I wish I were the only one, because then noone else would be this delicate and in so much pain. I would take it all on me, just to save anyone else from any form of#EDS Because it's wank -
Becoming your own advocate: It is not uncommon for someone with
#vascularEDS to attend their local A&E department, only to find that the medical staff have never heard of the condition. It is important that you inform them of a#vEDS diagnosis https://buff.ly/2WtXcBd -
POCUS Tip: Do not mistake the IVC for the aorta! Check out our free printable
#POCUS infographic on#ultrasound scanning the abdominal aorta! http://ow.ly/n6je50wgrVb#vascularEDS#vEDS#ThinkAorta#foamed#foam#foamus@Wilkinsonjonny@PittIMPOCUS@POCUS_Societypic.twitter.com/zCYRaukeIS
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12.18.19 my Alexa would have been 14. My physcian didn't listen when I told her something was wrong. She actually convinced me it was all in my head. Forgiveness took years. A hematoma behind the placenta caused me to deliver her too early.
#vascularEDS#foreverAmomOF2pic.twitter.com/m4hTlj68mW
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