UK Keratoconus Self-Help and Support Association

Hi there me again.... I have had great fun exploring this sight over the past few days.. and I have learned a lot.. like I am not the only person who wears a baseball cap.. and goes mad when I lose it.... coz of the glare etc....I have learned a lot about the condtion and dont feel so scared now..... but I must take it a bit more seriously than I have done so... although I must amit I dont quite understand all the different lens you lot have??!!?? may be someone should do a cribb sheet.. I go for my fitting on Thurs so wish me luck.... As I haveing the first lot done privatley until can get into the hosp system...I am not sure what I should ask for??!!! so thanks for all the info it has been a great help ..One last thing how do u get the nice flags they look brill ... thanks again

different lenses??? will i have to spend more money?? on more than one pair??
You can get them through the hospital???
I think i ought to have done more reasearch!!!
I really hate losing my baseball cap as well !!!

Goood luck at the fitting!!! im dreading my first time!!!

Hi If u get the lens at a hosp u get them a a reduced rate....from what I have read about £50 per lens.... I know last time I had them and being on income support I did not have to pay..not sure if this is the case now..... I know last time it took me a year to get into the hosp system but I have been told it should be less time.. but I have a friend who is paying for first lot as my sight is not brill at the mo.. not much useful sight in my right eye at all... so I decided to go private until I could get hosp lens.. I was told.... £300 for lens and fitting etc... as to different sort there seems to be loads!!!! I hope this is of help form one new bod to another !!!! take and good luck

Yeah im paying just under £300 for my first two.
BUT its only bin one day scince i found out about the condtion.
I dont really want to be waiting around for the hospital. hopefully i will be ok in a few weeks just need to wear my glasses untill i get it sorted i suppose.
With any luck i will only need one pair
Cheers ill look into getting them off the NHS

The standard first lens for them to try with people with KC is the RGP corneal lens. This allows a good flow of oxygen to the cornea, both through the lens itself and by a kind of pumping action as the lens moves on your eye and is lifted slightly when you blink.

I wore RGP corneals for years and years before they became a bit of a problem for me and the optometrist tried something else.

I am open to being corrected here but I think that my recallection is that on the NHS lenses cost around £50 per eye per year. If you need a lens to be replaced during the 12 months after it was dispensed, the replacement is not charged, unless that is you have lost your original lens, in which case you pay for the replacement.

It is always a good idea to insure your lenses.

Andrew

Since being looked after at the hospital I have only to spend £45 per lens. The good thing about it is that I have only had to pay if they have completely worked for me. I usually take the lens away for about a month to trial them before they have ever asked for any money, so I would ask about this, as you don't want to pay for lenses that don't work.

Hard lenses and sclerals last a good while too - so they are sort of a bargain at this price! My last pair lasted a good few years until they needed to be replaced. Good luck with finding some that work for you!

The type of lenses you have depends on the severety of KC, lens tolerance, what the optomes experiences is etc, etc.

Therefore it is wrong of us to recoemnd a type of lens, only share what has worked for us and what we ahve learnt from others.

It is best to be guided by your optom as what works for one person may not work for another.

Here is what we have started Treatment options for KC

Go to Contact Us and register your details, you will be sent all sorts of information on KC that will be useful to you, yuor familly, employers, tutors and so on. You will also get our regular news letter and notification of any local support group meetings to you.

You should be able to be reffered to a hospital for your lenses, just ask.

This will be a very expensive process otherwise, my optom refused to treat me because with KC it could cost me thousands and still not produce the right results.

If reffered you will pay around £50 per lens and any changes needed during the year you have them will be free. Don't go private, it may be quicker but it will definitely put you out of pocket for a condition that a number of great hospitals are able to help with

Hi there!

I got RGP lenses which most people with KC get to start with which I have been wearing since I was 14. Lenses do take a little time to get used to but hopefully they will find a good fit for you soon! Best of luck for Thursday!

The flags you can add by updating your profile, hoping that you can work that out as well.