My Struggle with Macular Dystrophy

I was born with weak eye muscles and had a squint.  I can remember attending hospital appointments at the Eye Department of Birmingham Children’s Hospital.

I didn’t start wearing glasses until I was 17/18 years old as I couldn’t focus my eyes properly looking from paperwork to keyboard.  The optician put a prism in my glasses to counteract the double vision I was experiencing.  He also gave me exercises to do but I always felt sick doing them.  I didn’t mind wearing glasses then as I had wanted to since I was little now I find it a faff as I have distance and reading glasses.  I have on occasion left the house wearing my reading glasses only to return to change them for my distance glasses.

During a routine eye test in April 2016, the optician found something wrong with my left eye.  I had to wait eight weeks for a hospital appointment

At the appointment I had the pressures in my eyes checked, scans of the back of my eyes taken.  The registrar explains to me that I had a rare eye condition called Macular Dystrophy.  I have for a better description bubbles or drusen (as they are called) on the macular part of my eye.  This means that when they burst I will lose my central vision, so I won’t be able to watch the telly or read a book.  I should have known that it was rare as I was the youngest person in the clinic.

The parts of an eye

a photo of the eye with Macular Dystrophy

a photo of a healthy eye

I was already dealing with depression as I have a problem with my stomach- I was being sick all day every day and was not hungry.  My depression got worse as I was scared that my boys will develop it – still don’t know.  As part of their routine eye tests they have photographs taken of the back of their eyes and so far, there is no sign of Macular Dystrophy.  My last hospital appointment the consultant said I had the eyes of a 60-year-old – as I am not sure if my parents had it I don’t know when the bubbles will burst.

I have family history of glaucoma, diabetes and cataracts – so one way or another my eyesight will deteriorate.

So, what is it like living with Macular Dystrophy.  I have blue or white dots appear in my vision.  Straight lines look like chicken wire.  I have floaters – some are grey, some are black outline with a black dot in the middle.  Occasionally my vision is disturbed by patterns that look like a QR code or giraffe skin.  When they first happened, I was scared now I just make a note of them – what they look like, how long they lasted, when and where I was when they appeared.

I like to sit in low light as too bright a light causes the floaters and headaches.  My family don’t like it much when I am sitting down in the lounge without the lights on.  Though I don’t like going out in the dark as the lights seem brighter.

As I get different or new developments with my eyesight I will post them here.