Author: One Vision

An honest, warts & all sightloss blog about living with a rare genetic eye condition, Macular Dystrophy, Stargardt's Disease. To track how this progresses in myself. Hopefully help others & bring awareness. Let's see what happens next...
Posted in Before Diagnosis, How I'm Adapting

Lucky

Posted on by One Vision
Please don’t think I’m feeling sorry for myself.
I’m not.
Never have.
I realise how lucky I am.
I’ve seen my son and nephew grow up. Seen beautiful views, been independent.
I will keep on seeing these for a long time to come I hope.
I drove a car, for 29 years. A lot of people I’ve read about won\’t do that because this condition has started causing them problems far earlier.
There have been mothers blaming themselves because they have a little one at home that will never see the things I have. Parents aren’t to blame at all. Mine wouldn’t have even known they carried faulty genes they passed onto me.
There are parents with little tots that won’t see what there children look like when they get older. I have.
I still can see. I’m OK. This blog is to track it. For myself and for anyone that is interested in following my story. Which maybe their story too.
Facebook groups especially gave me an understanding of something I had never heard of. People who understood why I could see a leaf on a tree in the distance. But had to zoom in when looking on my phone.
It’s complicated. Hard to explain. Don’t really completely understand it myself.
I always appreciated the little things in life, just moreso now.
Posted in My Tests Explained

What happens at a Visual field Test

Posted on by One Vision
A depiction of what you see in a field test. Square grid and dots
To check your field of vision.

I’ve had quite a few of these tests.

I’ve got all of the tiny lights so far.

You pop your face into the machine and then you focus on the central dot. Without moving your eyes from this position, you then tell the nurse how many little white dots you can see.

Posted in Follow up letters

Testing times

Posted on by One Vision
Pinhole glasses on a clipboard
I’ve found out what my tests are I’m having.
Got a follow up letter and appointment for this coming Tuesday today.
That was quick, and a bit unsettling if I’m honest.
I don’t really understand all the medical terms but, Right eye PED at macula (looked like a little hole dip in the layer) and both eyes show outer retinal atrophy.
The test I am having on Tuesday the 1st October is for Autofluorescence
I also have one on the 3rd of October for a visual field test.
Then I’m waiting for an appointment for an ERG.
My right eye best corrected, (which means with distance glasses ) is 20/80. 20/60 with pinhole.
My left eye best corrected is 20/60. 20/50 with pinhole.
This is a change, from the 20/20 vision (corrected) when I was first diagnosed four and a half years ago. 20/30 2 years ago.
I feel worried and a bit sick if I’m honest.
It’s happening. This is really happening. Quicker than I thought it would.