Destiny Lomonte, Vascular Ehlers Danlos Warrior and Activist
My name is Destiny and I am 25 years old. I live with a disease called Ehlers-Danlos Syndrome, type 4, otherwise known as Vascular EDS. When I was 4 years old my intestine ruptured and that was when I was diagnosed with VEDS. Vascular Ehlers-Danlos Syndrome is a genetic disease that affects the organs, arteries, and other vascular areas in the body. It causes organ ruptures, dissections and aneurysms, and is often fatal. I suffer from multiple secondary conditions caused by VEDS such as gastroparesis (paralysis of the stomach) that I am now tube fed, a colostomy due to the rupture and removal of my colon, and I have a spinal cord injury. Despite all of this, I graduated college and now work as a crisis counselor. In my spare time, I work with my service dog and enjoy going hiking through the woods.