So scared

[Brooke9216]

Hi, I'm new! My name is Brooke, I am 22, and found out on Saturday that I have Kerataconus. I will be seeing the specialist on Friday morning to confirm and then to see what I do next. I currently wear soft lenses for astigmatism and such, and I had no clue anything else was wrong. Now I am so scared! I want to think my case is mild/moderate, but I just dont know. The thought of surgery or transplants scares me quite a bit. Can the hard lenses or something non-sergical fix this? I was also wondering if anyone has advice on alternative treatments such as vitamin supplements.

Thanks again, I look forward to being a part of your board,
Brooke

[tommy.dean]

hey brook sorry to hear you've just been diagnosed buddy, if you wear soft lenses to correct your vision then KC is very mild make sure you get to a competent KC specialist i'm 20 an have had KC for 7 years an can tell you there is some jokers knocking about, when it comes to doc's, all the best and hope you don't let it all scare you too much if it makes you feel any better KC is a disease tthat creative people get an this has been proven in studies so at least it means you've got potential anyway good luck
tom

[Matthew_]

Brooke,
Sorry to hear about the KC. Its undestandable to be scared as you will know liitle about the condition at this stage and what it means for you.
If your KC is mild, you may be able to cope with soft lenses or glasses. Beyond this 'hard lenses' can be used to manange the condition and affors excellent eye sight, whilst you are using them. For a small minority, corneal transplants can on the cards. But to be honest, I would not worry about this right now. There will lots of other methods to try first. It can take a little while to get referred and fitted with the right lenses and for some us, getting on with the lenses can take a few weeks or months. So basically, don't get disheartened at first, it might take a while to get the right lenses. There are a lot of links and info on the home page but basically, most KC sufferers lead completly normal lives. Its just a case of adjusting.
Try not to worry.

[Michael P]

Hi Brooke and welcome.

I agree with everything Matthew has said.

I have been wearing hard/gas permeable lenses for about 35 years and my condition remains mild /moderate .

You will read about more extreme cases on this forum but these are in the minority and the vast majority of KC'ers get by with lenses, or even glasses.

Try not to worry and if you haven't done so I suggest you get your GP to refer you, as soon as possible, to a specialist NHS eye clinic to get you into the system, as this could take 6 months or so.

Let us know how you get on.

[LOUISE B]

Hello Brooke,

Soz to hear you have discovered you have KC.

While the NHS will generally only recommend glasses, contact lenses, then transplant, there are other alternatives. Relatively recent research seems to indicate progression of KC may be slowed and vision improveed with other options.
There is treatment called crosslinking (C3R) which in simple terms, hardens the cornea and thereby slowing and in some instances halting progression. Other options are INTACS, which are small plastic implants. These can flatten the cornea to make contact lens fitting easier and can also improve vision. INTACS may be available on the NHS in the future, and C3R, further in the future, but it will take time. C3R is only currently available privately, in this country, but it is unlikely that an NHS consultant will mention it as some seem to be unaware of the developments.
I have had C3R in both eyes and INTACS in my worst eye.

Best wishes for your visit to the specialist.

Louise

[craigthornton]

Hi Brook

Welcome to the group, you will find a lot of support here.

I agree with Tommy Dean about seeing a competent specialist. The first one I saw, when I kept stating my left eye could not tolerate the contact lens he prescribed, said "Well, just leave it out". I went to my GP and he referred me to a specialist NHS clinc. They got both of my eyes sorted and I've never looked back.

Once you get over the initial shock of being diagnosed with KC and learn to live with its quirks, in a lot of cases it can be managed well. Until I developed hydrops in my right eye last year, I had the same prescription lenses for years and went for a checkup just once a year to keep an eye on me (no pun intended)