UK Keratoconus Self-Help and Support Association

Hello all,

been quite a while sionce i last posted, so hello to all the newbies. Went to the hospital again the other week (cov and warwick, coventry) my sight has actually improved for the first time i can remember!!
had a very long examination, and a new student doctor examined my eyes as well, I must be a regular now!
the consultants only worry was the period of time i was wearing my rgp's. How long do other people wear these lenses for?
he was worried about drying on the area of the eye not covered by the lens as it does not get proper tear coverage when you blink due to the lens lifting the lid off of the surface?

i have been using some refresh drops, which help me to where the lenses longer but i dont particulary suffer, apart from some dryness which i am used to.
any comments appreciated.

Cheers
Daev Hamblett
davehamblett@dsl.pipex.com



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I was diagnosed as having mild KC about 1 year ago, so i am quite new to all this. i am 28 years old but basically since I was about 21 years old I've had a strange bulging feeling in my eyes ,uncomfortability of seeing in bright light, struggling to keep good eye contact with people at close distance, I know it sounds strage but I could'nt even stare my girlfriend in her eyes more than a couple of seconds without strain and looking cross eyed. Also this interfeared with my work and still does. Uncorfortable in reading on white paper and small print I can only read slowly.Basically when I was 21 Iwas doing office work and I can't do it any more I've recently taken up work as a bricklayer after learning it in college for a while . My sight is getting progressivesly worse I don't know if i can carry on like this. Please somebody tell me if you experienced the same simptoms as me in your early stages of KC. Most of all the bulging strnge feeling is worst it feels weird and I feel like I even can't shut my eyes properly to sleep at night. Anyone had these feelings, any one know what I'm talking about? Please help!!!!

01.09.2002

hi sue

thank you for you help. yes after having read emails from you earlier and other who visit this site, i did ask my doc about scleral, and they seems not to be too much for them and secondly they are not available here in insia. let me know who your doc is and if my doc would send him my prescription, would they be bale to make my lenses there and send them to me???? my doc says she knows a few docs in uk and if i can give her contact addresses of some docs then she can communicate with them to try and get me sclerals. my doc says sclerals block your eyes from oxygen. is that true???? i am on rose k lens trials at the moment which come from australia.
ulka


>From: QT - Sue Ingram <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>Reply-To: QT topic <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: ulkanp@hotmail.com
>Subject: Keratoconus
>Date: Thu, 29 Aug 2002 07:49:50 -0500 (CDT)
>




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i am made to understand that vision is not too good with sclerals. i am already having a vision problem in my severe eye with corneals. my doc says with sclerals my vision will be worse. i get only 6/12 vision with corneals in left eye and 6/6 in right eye with corneals. surgeon says i need surgery, which i am not ready for. the only option i have according to the surgeon is i can go on with less vision in one eye ,if its not bothering my daily activities for another 2 to 3 years. i do have also have problems tolerating my left eye lens for too long. i am at present waiting for rose k lenses which were better then what i have at present. i have already registered with the eye bank, just incase i do have to go for surgery. dont really know what to do.
ulka

hi ulka,

where are you from India ?. did you try 'Sankaranethralaya' in Madras (Chennai) ?.
http://www.sankaranethralaya.org

Good luck..

thanks n regs,
senthil

Hello,

I have had KC for 12 years and have managed reasonably well with glasses up to
now. However my eyesite has deterioated in my left eye substantially over the
last three months and I am going to see my doctor this Thursday, probually to
be fitted with contacts.

Has anyone any suggestions as to contact lens wear. I tried them 10 years ago
and had a terrible time with them (which is why I have kept lenses).

Also does anyone get any symptoms before their eyesite gets worse. Over the
last few months I have been getting bad headaches (especially in daylight). I
also feel tired most of the time. For example I get very sore eyes at night
and wake up in the morning feeling just as sore. This seems to affect my
whole day.

Thanks for your help in advance.


Dov Uhrmasher

Hi All,

I'm quite new to the site, so i maybe asking a question that has already been discussed, but does anyone else have problems sleeping??

I'm had KC for over 3 yrs now - and its since then that i've noticed a total change in my sleeping pattern...
I had a corneal graft about two yrs ago in my left eye (once vision is improved in that eye, i can have the other eye sorted out)... I don't know if the insomnia is related to any of this. Would be grateful if I could hear what other people think on the matter.

Thank you

Hi All,

I'm quite new to the site, so i maybe asking a question that has already been discussed, but does anyone else have problems sleeping??

I'm had KC for over 3 yrs now - and its since then that i've noticed a total change in my sleeping pattern...
I had a corneal graft about two yrs ago in my left eye (once vision is improved in that eye, i can have the other eye sorted out)... I don't know if the insomnia is related to any of this. Would be grateful if I could hear what other people think on the matter.

Thank you
Dipti

Ulka

Scleral lenses are made from a gas permeable material nowadays so do allow plenty of oxygen into your eye. My vision with the scleral lens in my right non-grafted eye is pretty much the same as with my corneal lens.

Having a transplant does not necessarily mean you will be free from wearing contact lenses. As you know I am now wearing a scleral lens over my graft very successfully and most of the time I don't even know it's there.

If I were you and obviously finances permitting, I would come over here to the UK to see Ken Pullen. He is very experienced with fitting contact lenses onto keratoconic eyeballs and is a scleral lens expert. I saw him privately the first time. E-mail me: keratoconus@woodruff.me.uk and I will get back to you with as much information as I have.

Dov, I can remember finding contact lenses very difficult when I was told I had to wear them. I remember constantly having red uncomfortable eyes. However I eventually got used to them so don't worry, you will too! What you need is a very experienced practitioner and I can recommend a couple of people.

Headaches could be due to eye strain and photophobia is a symptom of KC.

Dipti, I sometimes have problems sleeping but don't think it's directly related to having KC. More likely to be from the stress KC causes us? I wouldn't say insomnia was related to corneal surgery at all.

Dave (901)

Most people with KC wear their lenses from the moment they get up to the end of their day. Eventually your eyes get tired (forgive the pun!) of this and cause the probs you're experiencing. Are you able to wear glasses at all, even ones you can't see properly out of? You may find viscotears eye drops by ciba vision helpful. You can buy them over the counter. They come out of the tube as a gel and turn into a liquid.

Regards, Carole.

Carole,

Thaks for the advice i may try those drops. I do still have my old glasses, but they are of very little use now. I do try to where these at home some times but there is little i can do with them, telly and reading are out of the question unless its glued to my nose!!!

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