I was diagnosed in 2017 with a rare genetic disorder called Vascular Ehlers Danlos Syndrome, or VEDS (vEDS). VEDS is a connective tissue disorder that causes tissues to be very fragile, and can result in artery and organ ruptures spontaneously, or due to minimal trauma.
Since diagnosis, I have been active raising awareness of the condition in hopes that no one else would feel as alone as I felt when I was diagnosed. I started doing YouTube videos shortly after diagnosis, and have been on a road of emotional growth since.
In 2018, I started volunteering on the advisory board of the vEDS Collaborative, a patient-centered research group led by Sherene Shalhub, MD. The vEDS Collaborative is working to push research forward in a direction that patients want it to go, and it has been an amazing experience being a part of this group.
Before I knew it, VEDS had become a passion to which I devoted all of my free time. I started doing a podcast where I talked to other people about their stories, and spent a lot of time educating and speaking at conferences and symposiums around the U.S.
Finally, in October of 2019, The Marfan Foundation formalized a VEDS division, The VEDS Movement, and I started working my passion full-time as the Director of the Movement. I could not be happier!