Macular Dystrophy

I should explain what Macular Dystrophy is and how it differs from Macular Degeneration.

Macular Degeneration is where the cells of the macular deteriorates which is the area at the back of the eye that records the images we see and sends them along the optic nerve to the brain.  The macular is responsible for focusing central vision in the eye, it controls the ability to read, drive, recognise faces and colours as well as seeing objects in fine detail.  It occurs in people over the age of 60.  There is no cure for either macular dystrophy or macular degeneration.

Macular Dystrophy means that I have drusen or blisters on the macular part of my eye and when they burst they will take my central vision meaning that I will not be able to watch the TV or read.  As part of the condition straight lines look like chicken wire – not straight but bumpy.  I have floaters, they can be black dots, clear dots with a black edge and dot in the middle to blue dots.  The other day I had three red dots that didn’t go away for an hour.  My eyes take time to adjust in different lighting situations.  I prefer it not too bright, if I go out in the sunshine I wear a baseball cap to help protect my eyes.  I also get patches of sight that flickers as if I am looking through a heat haze.  Now when these visual disturbances first happened, they scared me as I didn’t know what was happening.  When new things happen, for example an ambulance drove past with its emergency lights on I had blue teardrop floaters appear, I make a note of what was happening, where I was and what the weather was like so that I can tell my specialist at my next visit.

 

The macular with drusen

So, during my eye test the optician picked up something wrong with my left eye and referred me to see a specialist at Queen Elizabeth Hospital not far from where I live.  During the visit I had anaesthetic drops along with drops to dilate my pupils as well as a machine that looked like a thermometer resting on my eyes to measure the pressures as I have a family history of glaucoma.  Photographs of the back of my eyes were taken and the specialist shined a light into my eyes, so he could see the back of my eyes.  My first visit in July 2016, I was given the diagnosis of Macular Dystrophy, my right optic nerve was the wrong shape and there was a difference in the pressures in my eyes but were still in the normal range just close to the range where they would be concerned that I would develop glaucoma.  The tests also showed that I had thicken of my right cornea.

A healthy macular

According to the specialist I have seen, it is something that I was born with along with weak eye muscles.  I remember visiting the Eye Department of Birmingham Children’s Hospital to have eye tests.  Staring into a machine to look at either a hot air balloon or Yogi Bear.  I started wearing glasses when I was 19 years old as I had problems focusing when changing my focus from near to far without the prism in my glasses or when I don’t wear them I have double vision - one image is brighter and higher than the other.  If you are of a certain age you will understand the nickname my hubby uses – Nuggie bear – when I am not wearing them.  If not, I will explain that my eyes are not looking in the same direction.

As I was adopted and don’t have any contact with my birth mother, I don’t know if she or her parents had the condition.  My birth father’s parents adopted me, and they died before having any problems with their eyes and I don’t have any contact with him or his 3 sisters to know if any of them have developed the condition.  So far, my 3 boys eye tests show that they don’t have it, so all my fingers and toes are crossed that they don’t develop it in the future.

I am 42 with the eyes of a 60-year old and am the youngest person in the clinic!