UK Keratoconus Self-Help and Support Association

Hi everyone!!

I have recently been diagnosed with KC and am just looking for a wee bit of advice and probably just a general moan!!

I have worn glases since I was 11 (now 30 years old) and have always been quite shiort sighted, with astigmatism also.

However, went for a routine eye test in Januray and the optician told me she waas referring me to the eye clinic at the local hospital as she suspected I had KC in my left eye. She never told me much else about it, just that I would receive an appointment in 16 weeks time.

Appointment eventually came thru and I attended the clinic on Tuesday past. After having various tests done on my eyes and a big wait (was there for 2 hours all in) I eventually called through by doc, who confirmed I have KC in both eyes!! The left eye being the worst.

He then told me to make an appointment with my opticians to be fitted for lenses (soft ones at present) and to ask them to send a copy of my last eye test so he can compare the results to see how quickly it is progressing and that he would see me again in 3 months time where we would have 'a proper chat'!!

Obvioulsy I have been left with many unanswered questions and maybe you can help??

1. What is the point of trying lenses if he hasn't even checked to see how far this is progressing?
2. How much will also this trying cost me. I have two young boys at home and work jobshare. My husband does work fulltime but on minimum wage so obviously, like many of us I'm sure - money is tight.

I also feel as if I have wasted my time going to the clinic as 3 months is a long time to wait before the doc explains anything else. I feel as if he has just left me in limbo. I was literally in 5 mins with him

Any comments would be appreciated.

Hi Kirst and welcome!
Keratoconus is a very variable condition, and progression can be very different in different people. So monitoring whether anything is changing is the most sensible thing to do - and 3 months between appts is actually very good though I know it doesn't seem that way to you right now. Most people are only seen every 6mths or yearly!
And most people with KC get a big improvement in vision with contact lenses of some kind. The majority of the people on this forum wear contact lenses. But most of us also get subsidised lenses on the NHS (around £53 per lens) either by getting our lenses from a hospital which has a contact lens department, or by the hospital providing a voucher (HESp) which is then taken to the optmetrist practice which has a contract with the hospital to provide lenses. That may be a bit different with soft lenses (one of our optom experts can probably help here) depending on the sort of soft lenses prescribed. And I don't know how much the lenses would be without a voucher, but your optometrist would be able to tell you. If the money proves to be an issue and you can manage with glasses for the next 3 months, you could delay getting lenses until you're told more at the next appt. But obviously the consultant needs the result of your previous eye test so that he can see whether things are changing.
It's frustrating to be left in limbo, but KC is an unpredictable condition. But there's various information we can send you, including our basic information booklet about keratoconus. All you need to do is to e-mail your postal address to anne@keratoconus-group.org.uk
I hope this helps. And you'll find lots of support here.
Best wishes
Anne

Hi Anne,

Thanks so much for your speedy reply, it is much appreciated.

I have an appointment with opticians tomorrow morning so I will hopefully get some more answers from the optician then. The eye doc didn't mention anything about a voucher but I will certainly raise this with the optician.

I have found this website very useful and have probably had more answers from this than any other source so thanks again

Kirst