Background: Why I only have 5% vision

When people ask me about my vision lost one of the most frequently asked questions is how I lost my sight.  I thought some background might be useful for my blog so here is my journey to 5% Vision.

I started to lose my sight when I was around 16 years old. I was diagnosed with a condition called Keratoconus, which causes an elongation of the cornea. It results in blurry vision, and light sensitive eyes. At first glasses corrected the condition, then I needed hard contact lenses.

For me the progression of the disease was very quick, within 2 years I was booked in for a corneal transplant. Although both eyes were affected one was worse than the other so it was to be operated on first. The prognosis was very good, my visual problems should finally be over

Unfortunately my procedure was unsuccessful, the vision never really became clear despite trying glasses and a number of different contact lenses. Over the next 12 months my second eye deteriorated to the point it need a corneal transplant. I hoped this would produce a better outcome – but once again I was disappointed. This time my graft rejected, causing a lot pain and next to useless vision.

There were an number of other surgeries all of which failed to improve my eyesight. I ended up with severe astigmatism, being short sighted in one eye, long sighted in the other and for some reason developed really bad double vision. My eyes refused to work together any more. Not to mention the residual damage due to the failed graft.

As my vision got worse I needed mobility training, I started out with an ID cane, then a ong cane. However I felt that this was all just to tide me over until another operation when my vision would be restored.

15 years since my first diagnosis, I had been married and divorced and recently married for a second time. My new husband secured a posting to Sydney where the best specialists were. It was decided to try one more graft – this time with immune suppression to try and prevent rejection. It was the last hope for me to see again.

All was going well until it came time to ease off the immune suppression then once again the graft rejected. In addition the medications had done all sort of awful things to my body. I put on a heap of weight, felt awful most of the time and became really depressed.

Fast forward to today (another 10 or so), my eyesight has mostly stabilized although I have good and bad days. Some days my eyes are so painful I can hardly move, other days I just have discomfort. I have eye strain headaches every day but nothing unmanageable.

On my last visual assessment I was told I had the equivalent of around 5% vision. I am classified as permanently and legally blind. I have light and colour perception, see movement and contrast. If I bring things close enough to my eyes and use magnifiers on good days I can make out text.

I only use one eye at a time, keeping the other one shut as I still have double vision. I am extremely light/glare sensitive and wear sunglasses a lot of the time. Mostly things are just very blurry and the further away they are the blurrier they are. The best analogy I can give is it is like looking through goggles smeared thickly with Vaseline.

My residual vision, although limited is still very useful and for that I am incredibly grateful.