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The Keratoconus Story of a Merseyside Woman

Hi my name is Rae, I’m 30 and I have Keratoconus.

For as long as I can remember I have worn glasses, my sight was always a bit rubbish but even when my younger brother was diagnosed with kc at 16 it was never even considered that I too could possibly have it. At the time the specialists believed it wasn’t genetic and rare in women (this is now known not to be the case and I have a younger sister who also has the condition to a much lesser extent)

As a result I wasn’t diagnosed until I was in my early twenties, after a routine visit to my optician revealed that my right cornea wasn’t reflecting light correctly. I was packed off to my local eye consultant to be scanned, diagnosed and placed into the caring hands of the contact lens optometrist. I was told that because of my age it was highly unlikely that I would need surgery, or that I would ever be as advanced as my brother and not to worry too much.

The next few years were a succession of contact lens appointments, my sight continued to decrease and I was being fitted for new lenses every 6 months. During this time fed up that little was being done about his worsening condition, my brother went to see a kc specialist at the center for sight in London and was told that one of his corneas was about to rupture and he needed a transplant as quick as possible. He was transferred to Liverpool Royal Hospital’s specialist eye clinic (St Pauls) and had his transplant almost straight away. Worried that I was being neglected as well (I had only been scanned once and seen my consultant twice, first to be told I had it and then to be registered partially sighted) I requested an appointment at Liverpool and tried not to worry.

As it turned out I had been poorly served by my previous care, my condition was rapidly advancing in both my left and right eye due to poorly fitted lenses, extremely dry eyes and general stress. I was fitted with better lenses, had my tear ducts widened and was now being regularly scanned and monitored. My keratoconus did finally stabilize at the age of 29, which, whilst being wonderful has kind of left me in a strange limbo, my cornea is too bulged for intacs, but not at risk of rupture so no transplant, I am stable so cxl (cross-linking) is a bit pointless. I have been left bumbling along wearing my contacts adapting to being partially sighted.

There are good days and bad days, keratoconus is an unpredictable and often frustrating condition, without my contacts I am virtually blind and I have lost count of the amount of times I have lost lenses or they have shot painfully across my eye, one was even accidentally eaten by my dog. I had to leave my job, I can’t travel by myself and I tire quickly. I fall and walk into things constantly…

 But… it forces me to adapt, makes me resourceful, creative and inventive. My sight loss has brought focus and purpose into my life, I doubt I would ever have started my own business or know how to put my makeup on by feel or the other 1001 clever little tricks I have learnt and my home would definitely be much more untidy.

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