UK Keratoconus Self-Help and Support Association

HEEEEEEEEEEEEEELLLLLLLLLPPPP!!!!!!!!

I feel a bit silly to be posting this, but here goes.......

I was diagnosed towards the end of April and have, since then had one optometrist appointment to try, unsuccessfully, soft lenses.

Reading the forums on here I have become embarrasingly aware of how little I know about my own diagnosis. Up to now I have just gone along with everything I have been told to do, but the time has come to take control of my situation, hence my plea for help.

I have an appointment with my optom. next monday to try RGP lenses and I am hoping to take the opportunity to glean more information about my diagnosis, but I don't know what questions to ask.

All I can remember at this point is that my left eye, the keratoconic one, is affected vertically as opposed to horizontally vision wise, and that my optom. wants to improve my vision from 6/9 to 6/18 or vice versa, if that makes sense.

I don't know if anybody else experienced, as i have, the initial reaction of, "oh, I have keratoconus" to, "OH MY GOD, I HAVE KERATOCONUS!!!!!" a couple of weeks later when it starts to sink in. I'm not the kind of person to blindly go along with things (excuse the pun!) so now I really want to manage my situation as best I can.

Any help will be very gratefully received.

Kindest regards,

Jon.

Jon,

Your eactions are perfectly normal. I have had KC 20 years now and only discoverd the foum in 2004 and that is when I really started to learn about this condition.

The common questions are;

1) What are the management options open to me?

2) What lenses do I need?

3) What is my visual aquity and K readings and what do they mean?

4) How long will it take for my lenses to be made?

5) What is the likely hood they will be need to be tweaked for fit and vision once I am used to them?

6) How do I go about getting used to them?

7) How do I clean them and how freequently?

8 ) How do I put them in and out?

9) What happens if I loose one?

10) What do i do if the lens is in the wrong position on my eye?

These are all lens related, when it comes to the condition itself, that is an individual basis. I always make a list of questions before going in for the consultation and where possible a freind too so they can take notes. You often think of more questions, so your freind can write down the extra questions you ask and the answers you get too.

A diary between consultations helps too so when you are asked how you are getting on, you not only have the answers, but also the questions that arise in that period too.

I have pm'd you so you can discuss further if needs be.

Gareth

That's really helpful Gareth, thanks.

The question that really interests me is my visual acuity and k reading, I think that is what I need to find out and be able to interpret, but all of your other suggestions are useful and valid too.

I think I'll take your advice re; keeping a diary as well because at the moment everything I have been told at the clinic has kind of washed over me a bit.

Cheers,

Jon.

It easy to get information overload which is why taking someone else to take notes is so helpful.

Gareth, I couldn't agree more. My ex husband used to come to all of my appointments and it was a great help having 2 sets of ears take in the information.

I also found it useful to take a list of questions with me as it's all to easy to forget when you actually get in there.

Jon

I really have nothing to add to Gareth's post: except to wish you well with your appointment.

Andrew

ps 6/9 is better than 6/18: it means that you can see at 6 metres what a 'normally" sighted person can see at 9 metres. 6/18 means that you can see at 6 metres what a normally sighted person can see at 18 metres, and so on.

The 6 metre standard converts neatly into the 20 foot standard used in some other jurisdictions, so that 6/6 is equivalent to 20/20.

A

I guess then at the moment my vision is 6/18 and the best the optom. can achieve will be 6/9. Is that good, bad or what? All I know is that when my right eye is occluded I can't see anything on the Snellen chart at all and the clinic nurse even held a large letter up in front of me from half the distance to the chart and I couldn't make that out either.

Thanks for the replies by the way!

The best I can achieve with lenses in is 6/5 and considering I am like you without lenses, then the corrected vision we get is marvelous.

Normal is considerd to be 6/6 so getting 6/9 is is not far from normal. So when I get 6/5 I am seeing better than normal, that is at 6 meters I am seeing what a normal person would see at 5 meters. To be honest, most optoms I know consider 6/5 to be normal.

In the United Kingdom, 6/9 meets the standard to be able to drive a motor car.

Andrew

Cheers guys!