Tag Archive for LCA

Can you see me?

A friend asked me yesterday what I saw when I looked at her face in person not by looking at a photo.

We were sat only a coffee table width away from each other, so not far from each other.

As someone who has always had poor sight (although not as bad as it is now) I have no ‘normal’ memories of sight to refer to.

I usually explain it as. I can see the shadow of your eye, but not the colour or even the white in them.  I can see the darker colour of your mouth, but no detail or if you have food in your teeth.


But this doesn’t really help.

So, a quick look for an app at that App store and this is what I came up with.

A photograph of my face blurred to look the way I see it.

Can you see me?

Struggling with the change

Last month I got my routine 6 monthly eye test. My prescription has altered, which I knew before going to the opticians. I was struggling to see my phone, without holding it at the end of my nose and looking over the top of my glasses as I could no longer see close-up with them.

The change in my sight wasn’t a big change, but it was a significant one.

The way my eye condition is, with the strength of prescription that I need I can’t have near vision and long vision. I can have ‘reading glasses’ to see things that are close to me, like reading, seeing my children etc. Or I can have distance glasses and be able to watch tv or the kids playing around in the park. But I can’t see anything closer than my arm length away. If I didn’t suffer with LCA or Nystagmus I would be able to wear varifocals. But as I do, I can’t.

With my LCA I am now also unable to adjust easily to different light levels, meaning that I am also unable to adjust between two different prescription glasses, to go from distance to reading lenses.

So I had to make a choice…….

And I chose to see my children, large printed letters and the people that I love. Because on a bright sunny day, I wouldn’t see anyone even with distance lenses!

However, this time at the optician I received the news that I was very close to the limit of what they could do for me with prescription glasses. I am getting to the limit of a difference that having a prescription would make to me.

The other issue I had, is that although my eye’s have only changed ever so slightly in the last six months, it has actually been over two years of ‘ever so slight changes’ since I have been in a position to purchase a new pair of glasses, because before I have even chosen pretty frames, the lenses themselves are in the region of £280 (after allowances)

So, having the money to spend, I bought a new prescription and the frames to sit them in. Two weeks to make them, and additional £100 to reduce the thickness from 9mm to 3mm, I got my new glasses……

And all the ‘slight changes’ have added up to one hell of a dramatic change.

A change that means that on a bright sunny day, I am better protecting my remaining sight with a pair of non-prescription sunglasses than wearing my actual prescription.

My new prescription, although strong for me. Is in-fact the equivalent of a reading glass prescription in the amount of difference that it makes, especially with my distance vision.

So for the first time since I was about 4, I am getting used to not wearing glasses full time. An issue that I am struggling with just a bit.

When I am outside in the glorious sunshine that we are experiencing at the moment, I am comfortable and confident wearing my new sunglasses, but inside is a different story.

At home, right now as I write this I am wearing my glasses, when I at meetings I am wearing my glasses, but when I am in the gym or on the climbing wall, I do not wear my glasses.

And it is not a look or feel that I am getting used to…… Just Yet!

It’s official, I am annoying !!

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 !!!

Page Reader Press Enter to Read Page Content Out Loud Press Enter to Pause or Restart Reading Page Content Out Loud Press Enter to Stop Reading Page Content Out Loud Screen Reader Support
%d bloggers like this: