Quicktopic posts: Dec 2002

[Sue Ingram]

Hi Clare (1144), As Ray says, the most important thing about fitting lenses on a Keratoconic eye is that you have a very patient and experienced practitioner who is prepared to spend the time on getting the fit right for you. You might find it takes you a while to get someone who can do this for you but peservere as it is definitely worth it - and hang on to them once you have found them!

If you really find that rgp corneal lenses are not going to be any good for you again, then please look into scleral lenses before you contemplate a graft - please see my msg 1167 to Anne-Marie of today's date.

Good luck and keep us posted of your progress. Keep smiling! SUE

[Sue Ingram]

Dear Shirley (1152), At present I wear scleral lenses with glasses, but just recently I did try a mini scleral in one eye to try and improve the vision with just a lens and I do empathise with you! My problem was that the mini scleral was fine all the time I was wearing it - in fact I could wear it for hours and not even know it was there (even more comfortable than my normal sclerals), but when the time came for me to try and get it out of my eye - absolutely no chance whatsoever; it was like it had been stuck on with Superglue!

I was getting so desperate that I thought I might have to go to the local hospital and ask them to remove it, when I eventually managed to prise it free with copious amounts of amidose and a plunger. Although my eye did not hurt with the lens in, it ached for a long time once the lens was out - like it had been putting pressure on my eye and this caused the pain once the pressure was removed - very strange.

So, I have given up with the mini scleral for the moment and gone back to my normal sclerals. I used to have a problem with air bubbles when I first started wearing them - could never seem to get them in without the bubbles. It might be worth you peservering, although I do know that some people always have a problem with air bubbles and cannot get rid of them at all. Good luck and I hope you get things sorted out when you next see Ken. Take care. SUE

[Sue Ingram]

Dear Iris (1155), Sorry to hear that your friend has been diagnosed with KC, however, the majority of us who have this condition lead perfectly normal lives, either wearing contact lenses or after having had a corneal graft; we hold down responsible jobs and try not to let KC stop us doing anything.

Yes, it is a degenerative condition - the shape of the cornea becoming more conical over time, thus causing the vision to be distorted and not correctible with spectacles, only with contact lenses (don't forget many of the population wear contact lenses for vanity so it is extremely normal these days). The speed with which the patient's eyes become more conical is a tricky one - I believe that with the majority of people it is usually quite slow (I have been one of the lucky ones in this case) and can often stabilise between the ages of 30 and 40 and not get any worse. However, there is a minority where the condition moves quite fast and it might be that a corneal graft is required. There are many KC patients who are walking around with successful corneal grafts and again, living completely normal lives.

It is not possible to know how quickly the corneas of someone with KC will become more conical as everyone seems to be completely individual and it is therefore impossible to predict.

I am assuming that your friend will be given contact lenses which he will get used to and then find that he can carry on his life and his job no differently from before. Have you checked out the KC Group Webiste on http://www.keratoconus-group.org.uk as this will give you more info. He may find that he needs to talk to his Personnel Dept and explain everything to them.

If your friend needs any more help or advice to put his mind at rest, please do not hesitate to contact me on sue.ingram@virgin.net. I have had KC for over 25 years, have always worn lenses, not so far had to have a corneal graft and always had extremely busy and pressurised jobs! Take care and keep us posted. SUE

[Sue Ingram]

Dear Harpo, I am so sorry that you are having a particularly rough time at present. I have never experienced a hydrops myself but do know people who have and although it does sound pretty horrendous at the time, they all seem to have recovered from it, even in some cases with their cornea ending up flatter and less conical, thus improving their vision. So, sometimes there is something positive that comes out of a negative.

Living with KC does mean that we seem to have certain 'blips' when things don't go particularly well (I have had a few of these in 25 yrs!) but more often than not they sort themselves out and we can carry on as normal. Unfortunately, alot of patience is required during these periods!

I know you have got to live through this hydrops and it will probably take a while to heal, but we are all thinking of you. I know you must be extremely self-conscious about the way you look at present, but I am sure your friends will understand if you explain everything to them - you know what they say; a problem shared is a problem halved.

Do take care and I try and enjoy Christmas if you can. Please let us know your progress - it is something that could happen to any of us at any time. Keep smiling :-) SUE

[Sue Ingram]

Dear Jas (1120), Most people with KC seem to have a problem with driving at night - its the lights coming towards you which are the worst, isn't it? Can't really think of anything to suggest; I am fine during the day but try to do the minimum of night driving that I can these days. Obviously, this is not really a solution when you need to drive home from work every night. Is it possible that you could use public tranesport during the winter months? Has anyone else found something that works for them when driving at night?? SUE

[Jeet]

Deleted by topic administrator 06-12-2002 12:07 AM

[Payne Family]

My daughter has KC (aged 11 now but she was diagnosed at 4) I had surgery at 16 and I have always had double vision. I have had increased problems with driving at night ( this winter more than ever) the glare of oncoming cars blinds me - maybe I should be tested as well !
< replied-to message removed by QT >

[listener@umbilical.demon.]

David says:
Hi All. Does anyone have any experience of KC and its
restrictions (if any) As a KC sufferer my levels of vision ore within the police requirements, but will; KC itself preclude
entry?

I don't know the rules for entry to the police (do I gather you
are applying to become a police officer? - good luck!) It is
possible to be a police officer with eyesight that is seriously
off 20-20 so long as it can be corrected. I once met a
policeman who wore contact lenses because without them he'd need those "bottom of a milk bottle" glasses! - he said he had to
wear the contacts when on duty, because he could hardly go out
on patrol, if and when he needed to, in glasses like those.

I think the problems you may encounter would be:

1. lens tolerance - can you keep them in for the length of a
shift? How sensitive are they to playing up if something in the environment is inhospitable? - eg. if you're chasing suspects
you can hardly stop and wash out your contacts is the suspects
ran through a dusty old derelict warehouse.

2. Lights - how are you about things like night driving, needing thick wrap-round shades when the sun comes out, working outdoors at night under floodlights?

3. Night shifts - combination of the above.

4. Computer screens.... which emit light and may be in small
print.

My guess would be that if they are otherwise interested in
recruiting you, they would then send you for an interview with
their Occupational Health department, where they'd ask you about your KC and how it affected you, and you'll be able to ask them
about anything that concerns you or that may give trouble.

I once spend 18 months working in a police civilian office -
where the police entry rules for physical health and fitness
don't apply, fortunately, or I'd never have passed! - and to
which the Disability Discrimination Act applies. I had to go to see O.H. before they offered me the job, and had a very pleasant chat with a very nice guy there, who surprisingly enough had
heard of KC only the previous week. The job turned out to be a
nightmare, but that's another story!

Good luck.

Rosemary
--
Rosemary F. Johnson

[listener@umbilical.demon.]

Dear Harpo,

Sorry you're still having all this worry.

Please don't worry about your eye if it is still cloudy and
swollen. I'd expect it to take a month to six weeks for the
cloudiness to clear, so please don't panic till then.

I know, I know: a month or six weeks is a long time from the
perspectives of a uni term. It's much easier for a greying,
wrinkled old crone like me to say that......

I'm going to guess that the people around you have noticed
there's something wrong, but don't know what, and so don't know
how to react or what to say about it. You know: "What's the
matter with Harpo?" "I dunno, but he's not himself, is he?"
"No, he's not, but he won't say anything, so I don't know what
to do for the best" "He wouldn't even look at me. Do you think he's got problems at home?" - can you imagine that sort of
conversation? Maybe, if you can bring yourself to do it, the
best thing may be to brazen it out - say something like: "Hi.
Don't mind my eye, it's got something very boring called a
hydrops, but don't worry, it's under control now..... " and then go and and talk about whatever else you'd be talking about - the job, or the next essay you have to do, or the cricket scores (or, maybe, not the cricket scores, particularly if there are any
Australians about!) Yes, I know it's far easier said than done, but maybe it's better to get it out of the way and get on with
the rest of the day. Also for your friends/colleagues - they'll knw that, yes, there is something wrong, but it isn't anything
fatal, and there isn't anything they can do about it so they may as well stop worrying.

Good luck, and hang in there.

Rosemary
--
Rosemary F. Johnson

[K]

The NHS do not pay for contact lenses for all keratoconics. Like all prescriptions, any charges for contact lenses are based on eligibility to pay (as is the case for spectacle lenses. Anyone eligable for help towards the cost of lenses (such as those on Income support or JSA) will have their lenses covered by the NHS. Those not eligable will have to pay the current NHS charge of £44.60 per lens.