Quicktopic posts: Jun 2003

[umbilica@umbilical.demon.]

Emma asked if anyone else had problems with photos:

Yes!! - worse than yours, by the sound of it. I can't even be
in the same room, hall, whatever, as anyone with a flashgun, and have had to give up doing all sorts of things because of how
many of the things there are all over the place.

Rosemary

--
Rosemary F. Johnson

[David Hollingsworth]

On the subject of photos and flashes, I have started to notice that even flashes of light on the TV cause extreme pain in the back of my eyes. I have however discovered that listening to Radio 4 with an eye mask on is extremely relaxing!
Dave.

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[aimee.wilkes@bt.com]

Hi everyone,

I'm really concerned about my lenses, although my vision is blurred (without any lenses) it is probably better than when i have my lenses in, my vision is very blurred (mainly around the edges) with lenses to the point where I don't feel any benefit of wearing them. I hoped that it would improve but i've had them for just over a month now, I am seeing my optician this afternoon but I just wondered if anyone else had any similar problems and what the outcome was ?

Thanks

Aimee

< replied-to message removed by QT >

[Shirley O'D]

Hello Susan M! I've just seen your message re. air bubbles and thought I'd let you know that at the moment this is also a big problem for me. I normally can get away with a few hours wear without bubbles if I stay at home. The moment I leave the house you can bet the air bubbles will raise their ugly heads - usually when I'm in the most unfriendly "contact lens place" possible! They start very small and then cluster together to completely blur my vision. I have been told a scleral lens shaped to fit my exact eye shape might help, but these things take so much time. I'll let you know if I make any progress. I really want to find a solution to this one because my vision is so fantastic with sclerals.

[Dominic]

Dear all, I have had KC for a couple of years now, and though it only affects one eye It's really begining to affect me. I was wearing softperms but they no longer seem to be working very well and have become really tight. My optician has put me onto RGP's but they just cloud up after a couple of hours and the '6/6'(allegedly) vision disappears completely. Can anyone suggest ways around this, as it's not like I'm not cleaning them well. Secondly I have heard about some type of lens called a Rose K which might be better. Is this true and can anyone recommend a specialist in London. Thanks Dom

[Maria Gabriella]

Hello Aimee,
i know exactly how you feel. I got my lens (I only need one) about 2 weeks ago. It doesen't change much I must say. Like you I still seem to see better without the lens. I went back to the optician and he tried to convince me that I will soon get used to it.
Can those who have more experience tell me whether this is true?
I really do not know whether it is worse going ahead and spending £45??
Gabriella

[aimee.wilkes@bt.com]

Gabriella,

It is very frustrating, however I went back to my optician yesterday and was told that I have got keratoconus on the back of my eye aswell, called posteria something or other, basically nothing can be done about this, and it is not very common apparently ! so this also doesn't help my vision . However she has ordered me some new lenses with a larger presription area in the hope that they will help because at the moment unless my lens is right on the centre of my eye i may be looking outside of the prescription area, therefore by having a larger prescription area it may give me better vision, as good as i will get with the posteria problem anyway, but if you have KC only on the front of the eye maybe having a larger prescription area will help, I'll be picking mine up in a couple of weeks so i'll let you know how i get on.

Aimee

< replied-to message removed by QT >

[Jane Richards]

I have only just discovered this website - it's good know that there are others in the same boat as me.

I was first diagnosed with KC nearly 30 years ago. I was able to wear ordinary hard lenses and my sight was practically normal. Then, whilst away at college I very cleverly succeeded in detaching the retina in my strongest eye without anybody managing to diagnose this. Several years later, I got referred to Moorfields who immediately found out what had happened; by this time it was too late for it to be operated on. So I now have vision in only 1 eye, with KC!

Luckily, I can wear my Rose K lens all day. I can read 4 lines down on the chart and manage to lead a reaonably ordinary life most of the time although I will never be able to drive. I have had 2 or 3 nasty inflammations that have meant trips to A & E, antibiotic drops and no lens wear for 1 or 2 weeks.

It is unlikely that Moorfields will agree to do a corneal graft as it is my only seeing eye and things seem to be stable at present. Some of you seem to have had a very bad time with doctors - since being referred to Moorfields, I have had no complaints regarding my treatment.

I would be interested in hearing more from people who have had grafts - particularly anybody who had the op on their only seeing eye!

[Gillian]

Maria Gabriella - I have had KC for many years but only diagnosed a few years ago. In my opinion I think you can either see or not with the lens. 'Getting used' to better vision has never been on the cards for me. However, I do believe one can get used to initial corneal lens tolerance by building up time slowly, handling lenses better and coping with them in every day life. My suggestion to you is to check that your optician has a full understanding and experience of KC. Perhaps you could ask him/her what experience he/she has in terms of numbers of patients with KC. As you know KC is rare and, therefore, high-street opticians often don't have the knowledge and patience required to deal with it. As the nature of the disease is an 'irregular' cornea that in itself makes the task of a well fitting, visually enhancing lens difficult to achieve. However, it certainly doesn't make it impossible. It is a matter of finding someone who has the expertise to help you. You could ask your GP to refer you to Moorfields. I think there is a delay but the benefit is you should be treated very well there and under the NHS. Alternatively if you let me know your e-mail address I will let you know the person who has so patiently and efficiently helped me.

[Gillian]

Please see my message to Maria Gabriella and I will pass on my specialist to you if you give me your e-mail address. I have had a Rose K lens which has been good for me and certainly worth a try. It sounds as if you need to find the cause of the loss of vision and then with that knowledge a more suitable lens could be found.