UK Keratoconus Self-Help and Support Association

Hi everybody
I'm 17 and I have joined this group just last week. And no one can ever imagine how worried I am cuz of this whole Keratoconus thing, I really need help. I have about -3.5 diopters of Astigmatism in both eyes and it all happened in 2007 so I had to wear glasses. I could see 6/6 with glasses but I bought soft lenses cuz I saw many girls in my school who wear lenses and I didn't want to be the girl who wears glasses all the time. Lenses were ok though I could see better with glasses but I kept wearing them some hours aday in case I went out with my friends. Just last week my opticion told me that I had to stop wearing them and I have been diagnosed with early Keratoconus. Glasses still make me see perfectly but can I get lenses??? to wear even if only for a couple of hours aday??? I mean since Laser doesn't work out for me I can't live with glasses forever.... I really want lenses

Is there anybody here who wears lenses and glasses for correction???

Sad J,

Welcome to the forum.

Firstly get reffered by your GP to the local hospital that treats KC as they might have a contact lens clinic.

They will probably be able to fit you up with Rigid Gas Permeable (RGP) lenses or the soft Kerasoft lenses if that is really what you want. Those of us who have had KC for many years and mine started when I was a teenager would recomend sticking with glasses for as long as you can.

Secondly peopel should accept you for who you are regardless of your looks such as wearing glasses. If they can't from my expereince you are far better off without them.

There is a limit as to how much astigmatism normal soft lenses can correct.

Hope this helps.

Hi

I was diagnosed when i was 17 as well, and got refered to my local hospital eye unit.
I was fitted with RGP lenses and have been in lenses ever since as i can no longer get any sight with glasses.

They are different to soft lenses as you really have to get used to them, i found them painful and like i had an eyelash constantly in my eye. Also they used to pop out very easily and i found myself not blinking, and turning my head instead looking side to side, made me look wierd.

Finding out that you have KC can be very daunting and it takes some time to get used to the idea that you cant have the same treatment for your eyes as other people have ie; soft lenses.
You did the right thing by joining the group. I have found a lot of support here and i'm sure you will too.

My advice is the same as gareth B, stick with glasses as long as you can. get some cool looking ones that make you feel better about wearing them.

All the Best

Tom

Sad J

Welcome to the forum

Yes, I wear a contact lens on my left eye, and I wear glasses. My glasses have value only on the right eye.

For some time I used to wear contact lenses on both eyes and reading glasses.

Life is a little complicated, but when you get used to things life does become easier!

All the best

Andrew

As Gareth says the first thing is to get referred to a clinic which is used to dealing with KC. The first line of attack is often to prescribe rigid lenses which if you can get used to them may be the answer you seek.
On the other hand, RGPs are kinda awkward and and can be uncomfortable and if you can get by with glasses, I would certainly get a pair, at least for wearing at home. I think one step at a time, starting with a referral. If you have glasses you can save the lenses for when you want to wear them, or perhaps you will be able to take to the lenses no problem, try to keep your options open.
Also, don't worry. At first KC seems daunting but you can adapt surprisingly quickly!

if your hospital clinic is anything like mine, you will meet highly expert people who will go the extra mile to help you cope with KC. I tried different lenses a d am now waiting for a 'haptic lens'. I think it's the same as a scleral.

Sad J

Can I just ask why you were told to stop wearing lenses?

Lynn

Thanks for everyone who has answered me, cuz I was just so confused but after joining this group I am feeling little better
Well the opticion told me to stop wearing lenses and he gave me some drops and asked me to come back in a month and after that we would talk about my lens' options
Anyway I think the best thing to do is wait till I come to UK and then visit the GP, because I am not in the UK for now
Finding out that I have KC is really disappointing but I hope life would be easier and I am really looking forward to meet highly expert people like some people talked about here cuz hopefully I think they would help me get what I want
And even when I had my soft lenses, I never put them on for many hours.... I used glasses most of the time and I kept the lenses only for a few times

hh anyway I REALLY hope that I would be fitted with soft kerasoft lenses

THANKS A LOT AGAIN

Jasmine