Patient stories
Alice, Canada

I am a mother and a scientist and live in Canada.

I was very nearsighted even as a young child. I was diagnosed with myopic degeneration in my early 20s and soon lost the central vision in one eye due to a misdiagnosed and untreated CNV. At that time, I was a graduate student in molecular biology and plant science. After this visual loss, I could no longer perform experiments that involved binocular vision, so it affected my career, but my daily life was not much affected because my other eye was still good. I still experienced over 40 episodes of retinal bleeds in both eyes over the next 15 years. Now I am in my mid 30s and have started losing my second eye because of atrophy and retinal thinning. There is nothing to do. No treatment for atrophy. Absolutely nothing.

Because of increased vision loss, I had to quit many things that I loved and that helped others too. I've been an amateur musician for 25 years, but I can't read sheet music anymore. I quit singing in a choir and learning a new instrument. I used to volunteer more than 150 hours a year with my professional order and university students. I can't no longer do it anymore because it involves a lot of driving and reading. I don't qualify yet for visual aids and rehabilitation. I am stuck in limbo. Lost. High myopia has always been a part of my life. Really thick glasses. Expensive specialty contacts. Prescription that goes down each year. No possibility of laser corrective surgery. Yearly retinal exams. Emergency hospital trip at each new bleed. Early cataracts. No contact sports to avoid retinal detachments. No heavy lifting. I'm fine with all that.

But watching my vision erode away in my mid 30s from atrophy in my last good eye... no longer

recognize faces from afar, read road signs... that hurts. I have two young daughters. My youngest is learning to read and I just can't read on paper anymore. It gets worse all the time. It breaks my heart. I want to keep being a productive member of society. I want to take care of my family, not to be a burden for them.

Your research on RPE replacement for atrophy is very promising. Please consider trying your treatment on us MMD patients. We need more than losses, fatality and depressing statistics. We are millions around the world and we need a cure.