Quicktopic posts: Jul 2001

[laura]

At last!! I am finally replying to every1. Big thank- you's to both Elaine and Ian for ur help & advice!

I think this website and things like it are v. important for people w/ KC. Not only 4 the exchange of advice and experiences to each other but mainly to know ur not fighting w/ all its problems alone.
I want to know, how I can help increase the no. of people who know of this site and how 2 get more people w/ KC to join in on the discussion. Any ideas!?! Reply to me here.

ELAINE

Thankyou for all your suggestions, sorry I havn't replyed until now. I will ask my Dr. about your 'EPOGAM' for Eczema.
Thanks for your concern and I'm so glad your crocodile face has gone!

IAN METCALFE

Hello friendly Printer of 29! I will E-Mail u to find out how KC gets u into trouble. :) Again, sorry I took so long 2 reply.

LINO from BRAZIL

I connected with u, when u said, u feel anxious & your eyes are often sore. I can also only wear my lenses for a total of 5 hrs a day, at the moment.
I feel it's often tough for KC sufferers dealing with contact lens wear, but at least you sound like you've found out a lot about KC, to help yourself. Good luck with everything Lino.

KATE LOVE

Answering to your hayfever querie. Yes, I think the whole of britain is dealing with hayfever madness this year. The pollen count has never been so high. I'm on tablets and still suffering.
I have slight asthma also, so it does drive me nuts but I find 'BENADRYL' is best 4 me. It deals with most allergy symptoms, no drowsiness and you can get it in the UK from your chemist.

Thankq 2 everyone, best wishes xxx

[Tony Stigle]

Deleted by author 12-07-2001 11:27 PM

[Scott Waters]

I was recommended to view this site by my optician (can't spell the proper name!). Having read through the discussion pages I'm relieved that I'm not a 'weakling' when suffering with blood-shot eyes, when not coping with hard lenses and when always having to rub my unconfortable eyes - seems to be common practices with people with 'our' condition.

I visit the optician more regularly than I visit my mother and I'm still struggling to find a solution that I'm happy with, I thought I was just very 'strange' or 'unusual', as many other people seem to cope with lenses and sight problems without the fuss that I seem to make. Can I assume I'm 'normal' for KC suffers?

I'd be very happy if someone could reply to make me feel a little more at ease, maybe to share a story of hope or a funny experience story (?). I'm a little concerned that one day I may have to give up my job as I drive around for a living, which will lead to non-payment of mortgage which will lead to - who knows?

Look forward to hearing from you.

Scott

[Ken Pullum]

Scott

There are quite a few problems with contact lenses that are specific to KC and it is not always easy to make them disappear. It’s quite OK to make a fuss about it as it makes most people feel better, but in the end you just have to carry on trying, which you seem to be doing. I know people who have worn lenses for KC since the 1940s, and they were made from glass in those days.

KP

[Ian - Oxfordshire]

Scott,

You ARE entirely normal. As a KC patient for about 13 years (a short-time compared to many members here) I appreciate entirely what you are going through:

Bloodshot eyes - a daily event for many of us and made worse in the Summer by hayfever - if you can (and I know it is very difficult) rest one eye at a time when you are at home - the eye heals quickly and will "appreciate" the rest. It's a little odd at first wandering around with one clear eye but your brain will start to compensate for the blur in the other.

Eye rubbing - again difficult when they itch but try to avoid this as you could be making things worse (especially if the lens is in!!!). Speak to your doctor/eye hospital about some eye drops to reduce the itchiness.

There are many lenses that can be used to correct KC depending on the cornea shape and severity (the best advice is to ask your eye hospital/optician). There are many possible options and if vision cannot be corrected (for example to meet the driving standards you mention) or contact lenses are not tolerated then a cornea graft may be an option - but it is by no means the first or even second option.

Keep reading and posting to this group - you'll find a really friendly and helpful group of people - all in very similar situations.

If you wish to email me then you can find my contact details on the local members page.

Best regards
Ian

[June]

Epogam, This is infact evening primrose oil,(gamolenic acid) though put into a specific dose and prescribable for eczema, it dosn't work for eveyone and needs at least a 3 month trial to see if you benifit but it can have outstamnding results.
Resting one eye:- I don't mean to be negative but some people find that the dizzyness and distortion never go away with only one lens in, I need my binocular vision and even when reduced to 1 lens for 3 weeks (i had an abrasion in the other eye) I never got used to the dizzyness and also became quite nauseated and unbalanced, and couldn't work. Moorfields have done some research into binocular vision.

[Ian - Oxfordshire]

June,

I agree the dizziness can be a problem with one lens out but if sat down quietly at home (not doing any DIY or precise work) then I can "cope". To be honest I don't rest my eyes as much as I would like to for the reason you mention but if I have sore eyes due to a scratch or high pollen then its the only option.

Regards
Ian

[Robert Smith]

Hi to all

I am waiting to go in and have a graft in my left eye up here in Leeds. Although I seemed to have talked over many of the problems and facets of the operation I am a bit unsure (because I forgot to ask!) just how quickly I will be back to normal. I know this is probably a bit of one of those 'how long is a piece of string' questions but I would be interested in other's experiences. In particular I have an invite to go over to the USA in the autumn and I have no idea how quickly I will be able to fly after the op!

Incidentally the sight in my right eye is very good.

Best wishes to all

Bob Smith

[Matt]

Robert,

Hi! I too am waiting for a graft in Sheffield on my worst eye. I beleive that it will be about a year before the eye is as back to 'normal' as it is going to get as this is the length of time that the stitches may remain in place.

I have not heard anything about not flying after a graft, but in case of rejection I guess it is best to be close to your consultant.

Have you heard anything about photophobia post graft? I suffer from terrible photophobia and dont know if grafting will improve this or not.

If you want to e mail me for a chat or to swap information etc it might be usefull for both of us.

my e mail is : matthew.cox5@btinternet.com

Matt.

[Jacqueline Cheetham]

I have had very mild, compared to some of you, KC for 14 or so years. I first started to have eye problems after the birth of my son for some reason... After many years of being past from pillar to post, I was refered to Moorfields. But my troubles really didn't end there. I wore a larger size corneal lens for a couple of years, until they became unbearable to year. I was then fitted with soft perm which again I wore for a couple of years, but never without problems. They became so painful that I was refered to Ken Pullum. I have very successfully worn sceral lenses for about 5 years. Until about a year ago, they becan to get 'coated' with a film of mucus which wouldn't go, it became impossible to fully blink over my eye as this made matters worse. I have just recently visited Ken Pullum again and he has helped me once again. This time with a normal corneal lens. I have no doubt that I will need my sceral lenses again in the future. But I wanted to let everyone know that if you are having a problem at the moment there are alternatives that could well help. The chance to change lenses during the day is something we should all have the opportunity to do.
Don't sit and suffer in silence make a fuss...
Good luck. Jacqueline Cheetham.