I’ve struggled with health issues most of my life. I was diagnosed with a rare form of kidney disease, FSGS, when I was 12 years old. I was forced to change and mature in ways that my friends were not, and that has always made it hard to make friends who understand what I and so many others go through. I never fully realized the full extent of my disease until I had to start dialysis when I was 18. I was on dialysis for 2.5 years before I got that call saying they had a kidney for me, and my life felt like it was finally starting. However, FSGS recurred in the transplanted kidney less than a month after the surgery. Suddenly, just like that I’m back in that dialysis chair but for plasmapheresis. It helped enough to allow me to go to school for Social Work and achieve my degree, but I still had 3 treatments a week. Eventually, plasmapheresis was exchanged for dialysis, which I am still on today. Today, however, my struggle is the empire upon which I sit. After struggling for most of my adult life feeling as if I didn’t belong and had no place in the world because of my health I never wanted someone to put themselves in the situations I found myself in as a young man. It was my partner who allowed me to see that what I had been through made me more, not less. I wanted to provide that to others and set out filming videos receiving my treatments, and the support from those videos inspired me to do something no one had done before: start a business despite being on dialysis. Ivye Wear was born when I created comfortable, accessible clothing that provides a sense of strength and preserves dignity as well as bring awareness to the incredible strength it takes to live while dealing with chronic illness and the wisdom gained from it.
Lifetime Achievement Nominee
I’m a Patient Leader