Keratoconus- my story by Clare, UK, CXL & more

Normality or Keratoconus? Why not both? Most of the time I like to pretend that I am normal but a few facts give me away: I have never met anyone with eyesight worse than mine I can drive a car but will rarely do so after dark I know from memory the first 3 lines … Continue reading Keratoconus- my story by Clare, UK, CXL & more


Glop on my Scleral Lenses

Life from my Wheelchair

I’m writing this in the hope that I can find a solution to the glop that appears on my lenses after I’ve worn them for 4-6 hours.

The photo shows some of the problem. I couldn’t get a better image as trying to take a shot of the lens with limited vision whist holding a iPhone in one hand is no easy task! Previous attempts showed much more glop, but the image quality was far to poor to use.

The glop is white and slightly sticky to the touch. It causes me real problems with either reading print unless it is both enlarged and bold. Trying to read grey print, for example, is impossible. The glop does really affect any close work I’m trying to do. It makes anything I’m reading blurred and as though I’m looking through a cloud.

Interestingly, it doesn’t affect my distance vision so much. So…

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Keratoconus – can I fly with contact lenses?

A question we are often asked on our Facebook page and group and on Twitter- can I travel with keratoconus? Can I fly? Commercial airline cabins expose passengers to reduced atmospheric pressure, reduced oxygen availability, and dry air. However if you are careful there is no reason at why you cannot travel. Contact lens wearers … Continue reading Keratoconus – can I fly with contact lenses?

Keratoconus; my full story so far

My blog

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…

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13 Month Post-Op (Corneal Transplant Update)

Life's a Performance

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…

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50 years with aniridia

Aniridia Network

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…

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ORGAN DONATION- the gift of sight

THE GIFT THAT KEEPS ON GIVING By Central Ohio Lions Eye Bank USA Organ donation is an act we hear a lot about on a regular basis. But eye donation? Not so much. Donating one’s organs (hearts, kidneys, livers, etc.) can save numerous lives. ‪#‎Myth‬: Only organs like the heart, kidney and liver can be … Continue reading ORGAN DONATION- the gift of sight