Quicktopic posts: Sep 2002

[Sue Ingram]

Hi Rosemary, Thanks for volunteering to join us on the Thames Path Walk - I will email you Mike's number. I am assuming that the cameras won't flash as it will be daylight! Please come on the walk, but avoid the photo if you are at all worried - think you have a pretty good excuse! Hopefully, see you there.

Are there any other budding walkers out there who live near the Thames and would like to do a few miles?? Take care. SUE

[Dal]

Hi there.

My name's Dal, and my optician recently told me that I may have KC but told me no more about it apart from the fact that it just gets worse. So not very helpful really! Neeless to say I wont be going back to him. Have decided to go to another optician, one who is more helpful, but whilst waiting for an appointment, decided to look on the net, and it was great to find this site!

Am 22, and still havent learnt to drive, and am also considering starting to teach psychology next yr, will the condition affect my ability to acheiev either of these things? Have to be honest I am absolutely terrified!

[Sue Ingram]

Hi Dal, I am sorry to hear that you may have KC but I would like to qualm any fears by saying that I think the majority of us who have the condition live completely normal lives and generally it does not stop us doing anything, although it may sometimes hinder things a little.

Not sure if you now know what KC is but basically the cornea becomes cone-shaped instead of being spherical and this then causes the vision to be distorted. This cannot normally be corrected by glasses (except in the very early stages) and most people wear rigid gas permeable lenses. This may take some time to get used to but after a while, you will not even realise they are in your eyes.

The condition does normally deteriorate - in some people quicker than others, but it can stabilise and not get any worse sometimes around your thirties. I don't want to scare you, but sometimes after years of wearing lenses or the eye eventually becoming too conical then the ultimate solution is to have a corneal transplant. I am lucky that I have not had to have the 'op' yet. You can read about all the lens options and the transplant on the KC Website (which I assume you have already been onto) - http://www.keratoconus-group.org.uk. The main thing to remember about KC is that it seems to be totally individual to each person so you will need to find the right solution for you.

Having KC should not stop you being able to study at this early stage. I have had KC for 25 years and have spent the past two years studying massage and aromatherapy and am now qualified. With regard to driving, again this should not be a problem for you as long as you can see well enough with the lenses. I passed my test at 18 wearing my corneal lenses and could see the dreaded number plate OK - I am still driving now, 23 years later! However, I think it is something that all of us with KC do worry about - that next time we visit our optometrist, they will say we cannot see well enough to drive - I am sure you will not have to worry about this for a long long time yet though.

I definitely agree with your decision to find another optician - if at all possible try and find one that specialises in KC. The successful management of KC seems to depend entirely on how expert your optician is in KC, how much he actually understands about living with it and how much time he is willing to give you. Alternatively, depending on where you live, you may be able to get referred to Moorfields Eye Hospital in London who have the most expertise in the UK (you also get the lenses & solutions on the NHS) or another eye hospital near you.

Good luck - I suppose there is still a chance that you have not got KC. But if you have any more queries, then don't hesitate to post another message. Hope the above helps. Take care, keep positive and don't let it stop you doing anything. SUE

[Eurosoll@aol.com]

Hi Dal,

Sorry to hear you have KC. I have had it for 12 years and drive and had it whilst I did my degree. Make sure that you continue to have a full life.
I went to three different opticians before I found one that was able to explain the condition. However the best source of information that I have found is on the web.

Good Luck

Dov Uhrmasher

Eurosoll@aol.com

[Emma]

Hi Everyone

Just to let you know how I got on on Wednesday with Proff Buckley.

He was really nice and helpful, it was quite funny when he asked me how far I could bend my thumb back - I always thought everyone could touch theirwrist with there thumb - but he explained people with KC are 6 times more likely be able to because of our collegen, which I thought was qute funny.

Anyway he said that the soreness in my eyes is due to 3 things. My allergies in my eyes, which I have tried Alomide and Livostin for already, he gave me a small bottle of Patanol which he has on trial from US. Has anyone else tried this? He also said the clouding over I have been experiencing is becuaseI have abrasions on my eyes from where my RGP lenses are sticking, but he says these will heal.

Also does anyone else have this problem - they said I dont blink properly and this is causing redness, the optrometist told me to blink harder and put in refresh drops every hours. does anyone else have problems with their blinking??

All in all though I am feeling happier about it,

Hope everyones ok.

Emma

[sarah marsh]

to dal
welcome to the site !
im 27 and i have just had a corneal transplant 5 weeks ago due to keratoconus .
my optition wasnt helpful and just wondered if you had the same branch ! my branch even asked wot KC was and does it affect eyes ?
you will find this site very helpful and friendly as i have especially since the op!
anyway please feel free to email me on STARLIGHT7723366@aol.com
love sarah xx

[Sue Ingram]

Hi Emma, Glad you got on well with Prof Buckley and things are getting resolved for you - your message sounds much more positive this time! It is often just a matter of getting some of these niggly things sorted out by someone who has some answers. I know some people do have a problem with blinking but I have never been one of these so cannot help you there. Hope things start to get better for you. Take care. SUE

[Dal]

Sue, Sarah & Dov

Thanks very much. I am very glad to have found this site, its reassuring to know that there is somewhere to ask for help, info and advice. Well I stopped feeling so distressed after visiting the site this morning and filled in my teacher training application form!

The opticians around here are not very helpful, I live in Hayes in Middlesex, but am always up town (ie central London), so if anyone knows of any decent opticians around there, pls do let me know.

Thanx again.
Dal xxx

[Dave Hamblett]

Hi emma,
i have been told to blink more to on my last visit to the hospital!! apprently its not so much blinking harder but keeping your eyes shut a bit longer so that the tears can cover the whole surface of your eye and not just the bit with the lenes on, (the lenes lifts the eylid off the top and bottom of the surface of the eye i believe). I did have an abrasion when i first started wearing lenes and put one in wrong. its hurts alot to start with but within a week it was healing and i am fine now, Hope this helps
Dave Hamblett
davehamblett@dsl.pipex.com


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[Sue Ingram]

THAMES PATH WALK

Just a quick up-date to let you know that the walkers are still going strong. They have had hot sunshine for the last couple of days and also a hill to walk up (bit of a surprise along a river!). They are walking Sonning to Marlow today - only 11 miles this time!

A few of us are joining up with them again this Sat and Sun to walk Marlow to Windsor and Windsor to Shepperton. If anyone else would like to join us, please do. Email me on sue.ingram@virgin.net for details.

Good luck to all the walkers, and especially to Mike - hope you are not too worn out yet! Take care. SUE