Our Interview with Katie Wright: Director of the VEDS Division for the Marfan Foundation

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Katie Wright

Katie Wright is the Director of the Marfan Foundation’s VEDS (Vascular Ehlers-Danlos Syndrome) Division, podcaster, and advocate. She lives with VEDS daily and was diagnosed in 2017 at the age of 28. Katie shares her unique story and unites others, who also struggle with VEDS, through her podcast, Staying Connected. Through public speaking engagements and her YouTube channel, Katie has discussed specific symptoms that she faces daily, hidden disabilities, inclusion, self-disclosure, collaborative research goals that are patient-centered, and the need for advocacy and awareness within the healthcare system. Katie has a powerfully positive outlook and is a beacon in the VEDS community.

Interviewed by our Different and Able president and founder, Alexandra Nicklas, Katie chronicled her life with VEDS, revealed some of her daily coping skills, her diagnosis struggle, and her overwhelming passion to help others with VEDS. She also shared the devastating news of mortality among her friends and community members. Through her recent grief and her own challenges with VEDS, Katie remains future-focused and determined to be a stronger ally and advocate. Katie is tenacious; living out her fight with VEDS, she has conjured up a dynamic and compelling spirit. Katie states that being diagnosed with VEDS, in short, “Yanks you out of your plan.” With this understanding that plans often change, Katie celebrates each success, continues her intentional mission to support others, and persists every day with a fiery torch, through the darkness of VEDS. 

 

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