Overwhelmed newbie!

[Cherry]

Hi everyone, I was diagnosed with KC a week ago, and if I'm honest I feel totally lost. I am not surprised that I have this condition as over the past 2yrs my eyes have changed for the worse at a quicker rate than they ever have over the last 11 years of me wearing glasses (I was told when I was 18 I needed glasses for astigmatism, but I have a feeling it was the beginning of KC developing). I am waiting for my appointment for contact lens clinic, which I am petrified about as I am squeamish about anyone or anything going near my eyes (I can't even put drops in my eyes), so the thought of RGP lenses fills me with dread. My consultant said that if I don't wear the contacts I will have to give up driving, which would be awful as I drive 40miles to work and back each day and I need to work. I know I will have to face my fears and persevere with the lenses, but I worry that they will irritate my eyes, or be sore and ill have to take them out then ill be stuck not able to drive home (do people usually have back-up glasses with them?! I'm not sure I can even have glasses to make me legal to drive anymore).

As you can probably tell I am a natural worrier, and I apologise that I'm all doom and gloom. I want to be positive about all of this because I know it could be a lot worse, I think I'm just frightened of the unknown.

Any advice would be greatly appreciated, just finding this forum/site has been a comfort and reassurance. xxxx

[Andrew MacLean]

Cherry

Welcome to the forum; the news about having keratoconus is never easy to hear and the condition does have a way of coming to dominate our lives. That said, it is a condition that does submit to a number of management methods, chief among which is the wearing of contact lenses.

It is worth persevering with them; if one type of lens or lens material does not suit you, there are several others to try. They usually start with RGP corneal lenses; these work for many people. If they are not for you, then there are others: soft lenses for keratoconus, hybrid lenses, piggy backlenses, scleral lenses ... ... ...

With contact lenses in place, most people with KC manage to live a normal life.

Every good wish, and never forget the primary rule for all who are told that they have keratoconus

Don't Panic!

[Nickysells1]

Hello

You will soon get the hang of the lenses. As Andrew says there are an amazing host of different materials and options these days.

I had rgp's for 14 years, now can't tolerate them but soft lenses by kerasoft specialist for kerataconus have kept me driving.

I was very ignorant to the many procedures and different lenses while I had my rgp's. there's a lot of help, information and support out there.

Also as Andrew says....DON'T PANIC!

Nick

[KeraTom]

Hi

Remember its not all doom and gloom. I was diagnosed about a year ago and felt terrible. As mentioned before there are plenty of solutions for eyes not just RGPs. I never wore contact lenses before diagnosis and hated the thought of them but you do get used to them very quickly.

[Ian Anderson]

Get a second opinion!
And possibly a third opinion

See if you can find an optom with some electronic measuring equipment and perhaps you can still be prescribed glasses that will work.

I was at the point you are at now about 20 years ago. Kingston Upon Thames Royal Eye Hospital could do nothing. I went on holiday to Zimbabwe of all places and an Optom out there prescribed glasses.

Returned from holiday and went back to Kingston for final visit and the head honcho there asked me to put on the glasses and was amazed when I read "Made in Hong Kong " on the bottom of his chart! He checked the glasses a further 3 times and then said that there was no way he could have ever come up with that prescription!

So I say again
Try someone else. Do not take your glasses with you. Make them check you from scratch and see what happens!

Ian

[Cheesypeeps]

Hi Cherry

Reading your post, I could relate to some of what you were saying. I was diagnosed 5 yrs ago, and similarly was not keen at all to put lenses in my eyes. It was never fully explained to me why I needed to, other than "If you want to see, you need to!"
At first I got soft lenses (not as floppy as daily type ones, but soft all the same). Defo an option worth asking about. I actually adapted to them really quickly.
Sadly the last year or so, things have gotten a bit worse for me and I now have to wear RGPs (Rigid Gas Permeable) lenses, which yes did take a fair bit more of getting used too, however, the difference between being able to see and not being able to see, has been worth the perseverance.
In the last couple of weeks, I got an corneal ulcer and couldn't see, to do pretty much anything. Couldn't drive, couldn't go to work, etc. And felt really down about it all. But I have came to the conclusion (albeit, a rocky road to get there) that you just need to play with the cards your dealt.
This forum has helped me a lot, about being stronger minded regarding the condition and not letting it get the better of me.
I guess what I am saying is, you have journey ahead of you, with ups and downs on it, but hang on in there, and try and not let it get you down. You are NOT alone. I know I certainly felt like I was until I discovered this site.

Make sure you ask plenty of questions, no matter how daft you may feel they are. That's what the specialists are there for. And after all it is your sight. So try and not worry about it, try either asking about it or talking about it.
All the best. Take care
Cheesy xx

[Cherry]

Hi everyone!

Thank you all so much for your advice and supportive responses, it's really given me a boost!!
It means a lot to know I'm not alone in all this and your stories give me hope and a lot to think about.

Can anyone tell me what will happen at my hospital contact lens clinic appointment? I know this is probably a silly question, but I'm interested to know long it takes and what they will do.

Best wishes to you all

Xx

[KeraTom]

Procedures do vary but I had several appointments to get the best fit / vision for you. They will typically order you some contact lenses which they will fit and then work over-the-top (like a regular optician testing if lens one or two is better) of these with different lenses to see if they can get the vision better. For me it took several appointments to get everything right as my eyes were very stubborn and didn't behave as they expected. I personally got quiet frustrated with the process as a lot of the lenses I tried made my vision worse! Remember to discuss your concerns with your lens fitter, they are nice people who really do try and get the best possible vision and comfort. When I was first diagnosed I thought that RGPs would be the only option and would really struggle, I currently wear standard soft lenses nothing special at all but it all depends on individual eyes etc. You do get used to putting lenses in very quickly.

[Cherry]

Thanks KeraTom, so at my first app, will they just check my vision from scratch and do nothing else? Then order me some lenses to come back at a later date to try?

[KeraTom]

Basically that what happened for myself. I did see the fitter on the same day but to discuss what to try / order. Then lenses were ordered to try later, but obviously hospitals do vary. So you'll probably have a few appointments but it is worth it in the end. I couldn't believe how good my vision was after all the tweaking and tinkering was done.