UK Keratoconus Self-Help and Support Association

Hello all,

I was diagnosed with KC earlier this year after repeatedly returning to the optician because I wasn't happy with the vision that my glasses were giving me. When I saw the consultant at the hospital he was certain that I would need contact lenses, however when I saw the optometrist for treatment a few weeks later she wouldn't even entertain the idea of me trying contact lenses. Is this normal procedure? I would prefer to at least try contact lenses for two reasons, my eye sight still isn't brilliant with my new glasses and I am possibly the clumsiest person to walk the earth a few months in to having my new (very expensive) glasses, I have lost them one and bent them 3 times. As I'm sure you can appreciate being told you have KC is quite scary (particularly when you spend hours goolgling and finding all the horror stories as I did) so I was quite disappointed that I seemed to have very little input into decisions on my treatment.

I was wondering what other peoples experience of diagnosis and initial treatment are and do you have any tips for getting the optometrist to take my preferences/ concerns into consideration?

I am in my early 20s so would like to experiment with as many treatments as possible at this stage so that I can find something that I'm happy with.

Thanks for any help/advice you can offer.

Erica

Hello Erica and welcome to the forum.

Did the optometrist say anything about why she or he was reluctant to offer you contact lenses? The problem here is that none of us have seen your eyes through a slit lamp.

I can think of some situations that may have made the optometrist reluctant to put lenses into your eyes: it may be that you have corneal ulcers, or perhaps your corneas are too steep? In any event, you have a perfect right to ask for a second opinion.

Go prepared to your next consultation. Have a list of questions written on a pad and carefully note the answers that you are given.

How advances is your keratoconus?
Are there other conditions (related or not) of which you ought to be aware?
Are your corneas clear?
What is the prognosis for your condition in the short run and in the longer term?

I'm sure that you can think of several other questions. Make sure that you understand fully the answers that you are given; this may mean asking more questions as the conversation develops. Never be afraid to ask "What does that mean?" if you think that the ophthalmologist or optometrist has lapsed into jargon.

Every good wish, and do stay in touch.

Andrew

Ps In the meantime, DON'T PANIC. there are loads of us in the same boat and we manage to get by (more or less). Actually the vast majority of us do very well indeed

Thankyou this is very useful,

She didn't really give a reason that I couldn’t try contacts, in hindsight perhaps I wasn't forthcoming enough about asking questions, I think now I've done some more reading and with the pointers you've given me I’ll be able to go better prepared next time.

Since my appointment at the hospital optometrist I have struggled alot with my glasses so in desperation went to my regular optician for some advice, they did a sight test and found that my prescription had changed in the two and a bit months I had been with my glasses. Is this common? as I am thinking I may need a serious bank loan if I am to replace my lenses with the thin ones that I need.

I realise that opens a raft of new questions, just things keep popping into my head!


Erica

Yes, I am afraid it is common for people with keratoconus that is advancing to have fairly regular changes in prescription. The good news is that after advancing a bit, KC tends to stabilize for a time: sometimes for quite a long time.

Andrew