Hi, I’m Van Duesterberg, a scientist and patient with RP.
I’m a patient scientist discovering a cure for my blindness. I take a lot of my personal lessons and help patients navigate their health. I was diagnosed with retinitis pigmentosa in 2010 and at the time, I was told to get mobility training with a vision cane. I was devastated and felt abandoned as there were no solutions for me to move forward except to accept my fate. My clinic didn’t know how to support or provide me with information in regards to the new “lifestyle adjustment” and any treatments that might slow down the progression of the disease.
I began my journey by collecting and keeping track of my own electronic health records, genetic data, and lab tests and being on top of the scientific literature of my rare retinal disease.
I have a deep passion for helping others navigate their health by sharing resources and connecting to other rare disease communities in finding their own cure.