I was diagnosed in 2017 with a rare genetic disorder called Vascular Ehlers Danlos Syndrome, or 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 of a cure or treatment. I started doing YouTube videos shortly after diagnosis, and have been on a road of emotional growth since.
To read more of my story, check out my blog, Translucent One.
While you’re at it check out Staying Connected, a podcast where I talk to other people diagnosed with vEDS and hear their stories!
Finally, take some time to say hi to Willis, a creation that came from an ER visit, a diagram of the arteries in the brain, and a sketchbook.
Thanks for visiting, and see ya soon! 😉
*The views, information or opinions in the blog, podcasts and vlogs are solely those of the individuals involved and do not represent the opinions of The Marfan Foundation. The Marfan Foundation is not responsible and does not verify for accuracy any of the information contained in them nor does the information constitute medical or other professional advice or services.