Dr. Matt Chia and Dr. Ezra Schwartz (@ezraschwartz10) continue the exploration of how vascular surgeons and patients communicate. They discuss how we share stories with one another and what may get lost in translation.
We are excited to welcome Katie Wright (@Translucentone) and Dr. Sherene Shalhub (@ShereneShalhub) to discuss the patient experience of living with Vascular Ehlers-Danlos Syndrome or vEDS.
Katie Wright is the vEDS Natural History Study project coordinator in the Division of Vascular Surgery at Oregon Health & Science University, a podcaster, and a patient advocate. They served as the Director of the Marfan Foundation's vEDS Division, The VEDS Movement until this past March, and they sit on the VEDS Collaborative (@vEDSCollabo) and Aortic Dissection Collaborative (@ADCollab) advisory board. Katie was diagnosed with vEDS in 2017 at the age of 28. Shortly after diagnosis, they started raising awareness and fostering community through YouTube videos. Katie then began a podcast titled Staying Connected, a space to share the stories of other patients and patient families. In 2018, Katie started volunteering on the advisory board of the vEDS Collaborative, a patient-centered research collaborative group led by Dr. Sherene Shalhub.
Dr. Sherene Shalhub is the inaugural John M. Porter Chair in Vascular Surgery and Division Head of the Division of Vascular and Endovascular Surgery at Oregon Health & Science University. She is also the Vice Chair of Regional Strategy & Surgical Operations for the Department of Surgery. Dr. Shalhub's research interests focus on improving healthcare and outcomes for those with genetic vascular conditions. She is the lead investigator for the vEDS Collaborative Natural History Study and the PCORI-funded Aortic Dissection Collaborative. Dr. Shalhub obtained an MPH followed by her medical degree at the University of South Florida. Dr. Shalhub completed her general surgery training at the University of Washington. She then pursued fellowships in trauma research and vascular surgery at the University of Washington.
Resources:
If you are interested in taking part in the study or would like more information, please contact the study team VEDSColl@ohsu.edu
Donate to the vEDS Natural History Study here.
Aortic Dissection Collaborative for Patient-Centered Research | BeCertain.org
Open repair of abdominal aortic aneurysms in patients with vascular Ehlers-Danlos syndrome
Audible Bleeding Exam Prep Aortopathies Episode with Dr. Shalhub
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