Hello, I wanted to share my full story so far with having keratoconus. I’ve told separate experiences before but I wanted to do it as a big post from the beginning.

I’ve always had problems with my eyes. I was always told I needed glasses from when I was little, for reading and looking at screens. My opticians said I had a lazy eye so I believed them, despite the fact the glasses were never making a difference. My left eye always used to drift and be unfocused. Glasses just didn’t help.

In the summer of 2013, I noticed I couldn’t see things far away or read things without being right up close. I was told I was short sighted so I wasn’t worried, but even in school I couldn’t see anything on the whiteboard. I went back to the optician and had another eye test. I was very shocked…

So yesterday it was 13 months since my surgery (yay!).

Today I had the highly awaited appointment with my ophthalmologist.  He was in a good mood today, and soon after we went in he started checking my vision improvement again.  After a bit of tweaking around with the lenses, he was able to achieve a 20/25 (a bit forced, but still 20/25) vision in my right eye.  And so, he finally gave me the green light to have glasses made!  Also, I am allowed to stop using the Lotemax, and only use the Prednisolone if I get sick.  Other than that, I have to use another drops called Tilinol, I believe.

After we paid for the visit, we went to the desk in the waiting room where they order your glasses.  I told the lady I wanted them plastic-y, and that they were kind of wide, so my face…

To discover that your child has been diagnosed with Aniridia is upsetting and stressful.  In 1964 it was devastating.  Diagnosis: blindness, prognosis, no hope.  I have read my recently deceased mothers diaries and her hopelessness, despair and unfounded guilt are etched on every page.

Two years later, pointing at a plane passing over our London back garden, brought my parents untold joy. I wasn’t blind!

Mainstream schooling followed.  I learnt to ride a bike, ignoring frequent crashes, and played outdoors unsupervised, as most children did in the 1970s.  I recall riding at top speed with a group of my friends to the park.  My eyes just never registered with me in my childhood and my parents never over protected me.

Strangely, it wasn’t until senior comprehensive school in 1978 that my parents encountered prejudice, the like unheard of today.  The teachers asked my parents to remove me as my eyes…