Hi,
Im Sophie, 23, Aus. 

I was hoping that by posting in this forum, I would perhaps be able to find people who share the same difficulties associated with keratoconus.

I was first diagnosed with Keratoconus 12 months ago at 22 years old. I had previously worn glasses for 5 years, for astigmatism. Over a period of 6 months I had a very significant deterioration in my vision - to the point where I thought I had a brain tumour as I was practically blind in one eye - only being able to see anything clearly if it was less than 20cm from my eye. I saw my local opthalmologist who is also my work colleague, ( I am a Instrument Nurse) and after an assesment and consultation with him I was referred to a refractive/ corneal specialist.


After two visits with corneal topography done of both times and several hundred dollars later, I was booked into have collagen cross linking 2 weeks later, costing me $2500. Although I knew it would not correct my vision, I was informed it would stabilise my condition. I had it performed in the vision clinic with 5mg of valium as sedation (which did not even hit the sides) and the procedure itself was horrendous, as was the following 24 hours of pain. 

Although over the following months the specialist told me my vision had improved and the keratoconus had stabilised,  my vision had become far worse, and I had become even more affected by the ghosting and halos to the point where I don;t feel comfortable driving. The ghosting and halos completely interferes with my view of other objects etc. At one of my recent consults with the refractive specialist, I asked about the possibilities of kerarings or intacts - which he refused because I am 'too difficult' as I was high anxious and panicked during the CXL procedure, and to have it done under general anaesthetic is not an option. He said that the only way of improving my vision is RGPs - but would not be a suitable candidate for contact lenses as I have a phobia of things touching my eye after an eye injury. I am also not a candidate for a cornea transplant as my vision is not considered to be bad enough to meet the criteria for the procedure - although I beg to differ...

I am desperate to have a second opinion from another specialist but having already invested several thousand dollars into seeing the specialist I am now, to start again at the beginning would be unaffordable. 

I now feel like I have no hope of being able to see clearly again. My keratoconus completely consumes my life. I am scared that it will affect my ability to work as I am a shift worker in a country town with no public transport. I feel unsafe driving. I get constant headaches and sore eyes, and constantly feel frustrated and depressed about the impact it is having on my day to day life.

I would love to be able to use contact lenses, but don't know how I could overcome my fear of it when I panic every time I have the air puff test done at the optometrist. 

Has anyone else been in the same situation?