Last week saw me attend my 9 monthly checkup at Moorfields eye hospital.
My condition LCA is grouped in with RP, retinitis pigmentosa, as it includes many of the se characteristics like night blindness, loss of peripheral vision. With LCA – Labers Congenital Amarosa, I also suffer with myopia (severe short-sightedness) and nystagmus (involuntary eye movement that is continual)
I am now down to finger counting in both eyes, when I used to get the top line of the eye chart stood at half the distance in my rift eye.
Given that six years ago I was between the second and third line on the eye chart (depending on the letters)
I have an incredibly strong prescription lenses, which is what gives me the sight I explained above. Without any glasses it is purely light and colour I can see without holding something above the top of my nose!
Please don’t be reading this and feel sorry for me, my sight is what it is, yes it may be worse than most, but it is much better than some.
So, up at Moorfields for my nine monthly check, I have noticed many little issues in the past few months and with the puppy being off work, I was even more aware of differences from the last time I had used my cane like this.
The long and the short of it, after four hours seeing a consultant, an eye scanning team, a retinal photographer, a registra and then my Proffessor, I have an increase in my cataracts (but not enough that they would risk laser surgery with my nystagmus) I have more noticable ‘floaters’ parts of my retina that is moving around in the eye jelly, a deteriation of my peripheral.
I can no longer do the peripheral eye test where you stick your head in a white bowl like test machine, stare at the red dot in the middle and press the button when you see a green dot.
Now they use the images they get from the scans and photo’s to tell me about my percentages. I have a difference of 21% from eighteen months ago, which sounds significant, but when I have less than 10% periferal it is even more…. I am not a mathamatitain, but even I can work out that that is a lot.
The cataracts are causing everything to feel as if it is either darker than it used to be or is unbearably bright when I have been in a darker environment.
So, the main reason I go to Moorfields is because I am part of DNA study to help with genetics for RP and LCA. So far they have found and researched 14 different genes…… And then there is me!
I told the registra that I liked to be different, he said I wasn’t different I was annoying. He actually called me annoying.
But then the Prof came in to see me, telling me of another study that I could be part of, very simple blood sample is all they need. He reminded me that my condition was definately not ticking any of the right boxes at the moment and making his and the research teams work ever harder. But that at the same time, he still found my scans and photographs magical.
So, I am offically annoying.
And that is exactly what is now written in my hospital notes too !!!