Problems? How you deal with it?

[ian89]

Hey everyone,

I'm new to this forum, quite glad I came across it as I don't know of anyone who had this disease or even knew what it was including me until I got it. I'm 20 and have had 'KC' since 17 and unfortuntetly got it in both eyes, just my luck I guess. I'm coping allright with it, I don't really have problems with my hard contact lenses unless they slip or I get a bit dust in my eye, I don't mind it. The thing is that i'm finding it hard to come to terms with it still even after 3 years, without my contact lens in my left eye, I may as well be blind as I simply can't make anything out of it and it's this that is depressing me, My eye sight is only going to get worst and that's what sucks, how do you deal with that? knowing that what you see now is the best you'll see in your life. Also another thing is that I feel i'm losing my social life, I can't really play sports anymore, I can't wear my contacts when playing because I run the risk of damaging it and also my eye but I can't play without them because I can't see whats going on. When I go out clubbing, sometimes I have to go home early because my eyes are drying up and my contacts are starting to irritate me, I try telling my friends this but they have no idea what it's like and when I mention it they always come out with the gag of 'Bet your going to blame it on your kerry katona' which pisses me off, would love for them to try one day with KC and see how they get on.

Also the itching is unbearable, I can't stop itching my eyes and I've been pulled over before in my car by the police for having a faulty brake light and got taken to the police station because they thought I had smoked weed because my eyes are bloodshot all the time.

Meh, it sucks, sorry about the rant but had to get it off my chest, no one knows what its like, my family can't help, my friends can't and in some ways my optometrist can't help but maybe you guys can give me some advice on how to deal with it??

Cheers,

Ian

[Anne Klepacz]

Hello Ian and welcome to the forum!
There are hundreds of us here who know what it's like! So I'm sure you'll get loads of replies and tips on how to cope. To start the ball rolling - you say your sight is only going to get worse, but that isn't necessarily true. KC can stabilise. And if it does go on getting worse, there are things that can be done. The last resort is a corneal transplant, which many of us have had. But it sounds like you're a long way off that, and that you're getting pretty good vision and wearing time with your lenses. But new options include corneal rings (Intacs) to flatten the cornea, and collagen crosslinking which is aimed at stopping the progression of KC. That's only available privately at the moment, but some hospitals are doing clinical trials and it will hopefully be more widely available in the next few years. Lots of people do manage to carry on playing sports of various kinds by wearing protective goggles - I'm sure others will come up with hints. And there are various eye drops to help lubricate the eyes to stop them drying out - artificial tear drops, Systane, Clinitas and others. It's often question of trying different ones and finding out which work best for you.
If you e-mail your postal address to anne@keratoconus-group.org.uk I can send you the DVD of our 2007 conference which covered all the different options for KC, and our basic information booklet about the condition which you could show your family and friends to help them understand. It is tough having an eye condition no one has ever heard of, especially when you're young. But I'm glad you've found the forum, and I'm sure you'll get lots of support here.
All the best
Anne

[tneedham]

Hi Ian

I was in the same situation as you, had KC in both eyes from 17, it progressed rapidly until i was 21 when i could see nothing without lenses, and i know exactly what you mean about the dusty lenses etc.
Unfortunately it is mostly a case of accepting what we have been dealt and talking to others that do understand what its like, this forum is Ace for that. There are many things that can be sone to ease the physical hurdles, such as programmes to increase the text size on your PC etc....
What contact lenses are you wearing? i found that my RGP hard lenses kept getting damaged and lost when i did sports, i was changed onto sclerals which are almost impossible to lose or damage, also they REALLY helped with when i got some dust in them, all iritation was gone.
Maybe its worth talking to your specialist to work out some better lens options that will suit you and your lifestyle better?
Where abouts are you based? It is great that you have found this site, hopefully itr will help.

Keep your chin up

Tom

[Grifteruk]

HI,

I know how you feel as I have had the last 10 years with my eye getting slowly worse. I have been at the point of having to wear contact lenses all the time for most of those 10 years.Otherwise I just tend to see a big blur. My G'friend is an optom and you should remember that it is very important to find an optom who does know about KC and the options available to you for lenses, surgical procedures and hopstial referals. Having an optom who knows about KC is a real step forward and I would have thought that someone on the forum could point you in the direction of someone local to you or your hopsital eye department could help. I cannot stress how important I think this is.

As to the sports thing, I played football for years with my hard lenses in without a problem. Maybe its not recommended, but football was not something I wanted to give up. I used to wear a soft lens over the top of the hard lens for the duration of the game to prevent them falling out. I never lost one !! I also cycle every week without any problem with lenses.

I have recently gone to wearing soft Kerasoft 3 lenses, which are a soft lens and which so far have given me good results. I think they could be something you could try to help with the sports thing, although they are more expensive that RGP's. For me they are not perfect, but I am still trying to get to a final fit and prescription with them and think they would now be my best option for playing contact sports (and nights out) safely. There are also other soft lens options available which may also suit you.

I have also had an INTAC in one eye and crosslinking in both eye to halt the progression, which has helped me to avoid a graft and actually improve my KC slightly. AN INTAC was the last resort for me but crosslinking is something which I personally think is something I look back on and wish I did earlier.

My advice would be to spend a bit of time making sure you find the best optom in your area & getting yourself into the NHS eye department for regular checks. I would also look into all different lens types and possibly invest a bit of money into trying options which may be best for you. If I can find soft lenses and options which allow me to do all the sports I want to do (including swimming, football, cycling, running) I am sure you can also find something to help. There are always ups and downs and times where it feels tough, but that is something you come to terms with.

[BurnTheAction]

grifteruk gave a good overview there!

im 23, diagnosed at 19 at end of first year of university (which sucked). as a previously night loving, sporty guy it has increasingly got me very frustrated and depressed at times.

unfortunately with employment and long hours commuting in the dirty london tube network, working infront of a screen etc contact lens comfort and weartime has gone downhill. im on piggybacked rgps now but vision and comfort is pretty poor. in terms of employment printing off the employee advice sheets from this site is a great move, took a while before my work believed me when i said i simply couldn't get my lenses in today to work.

i tried hybrid synergeyes but they really messed my eyes up, thats a month i want to forget, but i encourage you to research and explore many options, keep uptodate with KC developments and always bring suggestions to the clinic (nhs are pretty slow with new developments in the field!)

i have definitely stepped back in terms of late night socialising etc, i find it very hard to get through a night out at a club etc if its going on till 3, i usually end up taking my lenses out and relying on friends but dark clubs are horrific places with poor vision, but i find a few beers often relaxes the eyes and sometimes ill have a splendid night out where my eyes and lenses are fine till early morning and i can live like a normal graduate in london!

for me the worst is i love beaches but beaches and KC are horrific...sand, bright sunlight, rough sea, all things i loved but are ruined as keeping an rgp in thru that is impossible and just feels awkward.

ive started to realise i need to explore more options that the nhs and as grifter says have started to invest money in looking into new options and seeing specialists to explore different avenues.

new technologies and treatments are always on the horizon, hopefully one day KC wont be such a hurdle to great vision! if i can say one thing its that KC gives me a busy and interesting wknd of gym and other hobbies that my mates living for the wknd who stay out all night and sleep all day dont get! (small victory eh lol)