When I was first diagnosed, the doctors assured us that this was a slow progression.. most of the literature stated that individuals with RP don’t become legally blind until they’re 40.. I was assured by the doctors that I would have most of my sight for most of my life. Here I am, at 24 years of age, way past legal blindness. That irritates me a bit. And then, I can’t help but think of one of my best friends and her brother who were diagnosed at around age 5 and 7 and were legally blind in their teens. There are WAY more cases that I hear of nowadays of situations like this, early loss of vision, than what we were told back when I was diagnosed about being able to hold off til you’re losing your vision til later in life.
So what does that tell me, or what should that tell you? I’ll let you make your own decision on the latter but for the former, that tells me that doctors can be very wrong and that no one person’s disability or medical condition is the same. Now, I do realize there has been a lot of research done since then and the literature might have changed. I haven’t bothered to look that extensively recently. But I don’t think it really has changed that much.
How has this impacted me? Well, my family and good friends were banking on me not losing my vision until really later in life so when I did start to lose my vision fast I was confronted with people telling me that my vision didn’t progress that fast (quoting what the doctors and literature said), shock, horror, and and a lot of adjustment. I’m not faulting anybody on any of that, except for maybe the doctors and the literature who made it sound like it was set in stone that I wouldn’t lose my vision until I was around 40. They really should have explained how it’s really different from person to person.