Tennessee Office Welcome
My name is Julia. I live in Nashville, TN. I was diagnosed with PXE at age nine. I lost vision in one eye due to an accident at age 20. I began having spontaneous bleeds in the "good eye" six years ago. I have low vision and am considered legally blind.
I used to be a professional fundraiser and nonprofit executive. I currently work part-time at a neighborhood craft store and full-time as a single parent (and transportation coordinator!) for a teenage boy.
I had the opportunity to attend two PXE International conferences. At these meetings, I found it invaluable to share the good and the bad with others having similar experiences. This was why I agreed to be a PXE Support Group Office.
In my capacity as an office I receive phone calls from others with PXE and listen. I really value PXE International. I would like to learn to be a better advocate and educator for myself and the organization.