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I knew something wasn't right with my eyes, but...

My Rose K RGP contact lens

A few weeks before I started university in 2011 I booked my first eye test. I was diagnosed with astigmatism and hyperopia and was prescribed glasses, which corrected my vision. The optometrist also mentioned he suspected I may have a condition called keratoconus, but he wanted to review me a year later, so I didn’t think much of it. They initially worked really well, my vision was crisp and I was relieved of my headaches.

A year later, the clarity of my vision declined and the headaches returned. I assumed my prescription needed updating so I booked myself in for another eye test. Unfortunately the optometrist I previously saw was no longer at that practice, so I went to a chain optometrist instead.

I went on to have my second eye test and was told my prescription hadn't changed sufficiently and I should be able to see in my glasses. I questioned her of the possibility of having keratoconus, but she said I wasn't a suspect and my eyes were “fine”.

I decided to opt for soft contact lenses to see if it would improve my vision and I was self-conscious of wearing glasses outside the house. I have tried 4 different brands of soft contact lenses and although my vision was better than glasses, it still wasn't as sharp as the first pair of glasses I got.

I kept seeing different optometrists and although my prescription remained constant, I just couldn't see. My eyes were very slow at adjusting to the different lenses in eye tests. Sometimes I could notice the optometrists getting frustrated at me and I was often told my eyes were just lazy and I’d have to get used to glasses and contacts.

My keratoconus diagnosis

After 8 months I just abandoned glasses and contacts all together. I had headaches, everything was blurry again. I couldn’t go on like this, so I tried an independent optometrist.

This optometrist spent almost an hour with me for my initial eye test and patient with my slow eyes. Chain optometrists never invested that much effort on my eye tests. I asked him why I had so many issues with soft contact lenses and glasses. He said he was almost certain I had keratoconus. A few days later I returned for a topography scan which confirmed the keratoconus and I was fitted with rigid gas permeable lenses.

My RGP in my eye... look how tiny it is
I turned to the internet for support from other keratoconus patients and it really helped me. I must say though, no one was exaggerating when they said RGP lenses are painful, they hurt so much the first time I put them in, I was in tears in optometrists office. Ouch! It’s gritty, dry and tear inducing, but it does get better in time, I promise. There are also lubricants and rewetting drops which help. Nowadays my RGPs are comfortable, once I’ve put them in. Trust me, the initial discomfort is worth it. My vision with RGPS is fantastic.

Another thing is I’ve always had problems with allergies, eczema and I suffer from IBS and studies have shown keratoconus is linked with these conditions.

My future

Just a few days ago I had my first ophthalmologist appointment. The Keratoconus in my left eye is severe, he could see it just using a light. My right eye is also keratoconic, but not nearly as bad. He is happy for me to continue wearing RGP lenses. My vision is 20/30…one line off 20/20 and I am very satisfied with that.
He has referred me to a corneal specialist to discuss crosslinking, which is a minimally invasive treatment that strengthens the cornea. This can halt or slow down the progression, reducing the need for a corneal transplant.

I asked if I was going to go blind and was told no. He said if my corneas become extremely scarred, then I will need a transplant. I was very relieved as going blind was a major concern for me. I am training to be a nurse, I need my eye sight!

Aimee Scarlett

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