Eye disease

Well, there are days you will never forget: December 19, 2012 was one of those days. In the morning when I woke up I only saw the world in a blur; as if I were looking through a fogged window. That day we were immediately in the eye hospital and well, I got the message home that they didn’t really know either…  There followed a period of hospital in and out of hospital and in this way I received more and more information about what exactly happened to me. my vision was going on

There is a retinal disease in our family: choroideremia. It’s a genetic eye condition; it is a retinal disease in which holes appear in several layers of your retina, making it impossible to do retinal transplants, for example. It is therefore a progressive eye disease: you go backwards step by step. It is estimated that 1 in 100,000 men suffer from it, because yes, this condition almost only occurs in men.

Unfortunately, nothing can be done about this retinal disease (yet). With this retinal disease, most people do not experience problems with their field of vision until around the age of 40-50. So it started for me when I was 13.

After 1 year of investigations, they also found out that I have a gene abnormality of the optic nerve, the OPA-1 gene abnormality. Unfortunately, I am the first in the Netherlands to have this combination: retinal disease with an optic nerve disorder, so there is no experience to tell what my future is. It is quite possible that tomorrow, next week, next month, or … yes, maybe I will have my sight for another 1 year … no one to tell me: yes, I know that my future is complete blindness. Now my (hazy) vision is still about 2% and I can see through a tube of less than 4 degrees (about 8 cm in diameter)

My vision is a bit more than in the last picture, but it comes close to what I still see.