Quicktopic posts: Apr 2001

General forum for the UK Keratoconus and self-help group members.

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Alex

Postby Alex » Tue 24 Apr 2001 4:24 pm

Freddy

That is fantastic news! Keep up thr great work. I think Ian is right in what he says and I was really intested in the glaucoma angle - I didn't know that.

I have however found a great site with lots of really interesting info on Keratoconus. It is an American group called The Keratoconis Fedearation. They seem to be doing lots of work on KC and I am very impressed with their research. You can find them at http://www.nkcf.org -

Good luck Freddy

Alex

Alex

Postby Alex » Tue 24 Apr 2001 4:26 pm

I must be going mad!

It is THE NATIONAL KERATOCONIS FOUNDATION

Sue Ingram

Postby Sue Ingram » Wed 25 Apr 2001 3:16 am

Freddy - great to hear you are getting on well - keep up the good work.

Alex - I have seen the NKF website previously - before the days of our one! Tony, I know we have a link to this website - would it be possible for the NKF to have a link to our website - don't know how complicated this would be to arrange as they are in the States???

Sue Ingram

Postby Sue Ingram » Wed 25 Apr 2001 3:23 am

Hi Tony - like the changes on the website - looking good. Sorry, I am not able to help at the moment with updating the pages (up to my 'eyes' studying for exam), however, I am sure there must be some other willing volunteers out there who can help you..... SUE

Alex

Postby Alex » Wed 25 Apr 2001 5:11 am

Sue & Tony

Absolutely! I just looked at the site and It's really looking good. Well done! The new links look ace and you must ask Ken to write the second part of the article he mentioned - about the new and much improved surgical options. DLK has been a revelation to me. It is less than a month since Mr Daya carried out my surgery at The Queen Victoria Hospital in East Grinstead and the resulting clear single vision is something I never believed in my wildest dreams could be achieved.

Cheers & keep up the great work!

Alex

Robert

Postby Robert » Wed 25 Apr 2001 2:18 pm

I was diagnosed with KC in my left eye (only) in 1972/3 - am now 46. I struggled with hard contacts for some years - I used to compare it with having mountain ranges in my eyes. I gave up in the early 80's when an optician said stop as it was causing me considerable pain and discomfort. Sight in my right eye has been good but now deteriorating and now has slight KC. I, like another of the correspondents, was told that it may not spread but it looks as though it now has and I assume that eventually it will get worse - though just how far . . .

I am due to go to St James in Leeds in early May to decide on whether to have a graft in my left eye. My sight has deteriorated considerably over the last few years. I hate the idea of a graft but the idea of losing more sight is even more appaling.

Before finding this site I have never met or even heard of anybody else with KC and for a long time could not even spell it! ( and still can't).

Any advice? My sight in my right eye is pretty good and I lead a perfectly normal life except being totally unable to catch anything. But I find night driving definitely harder and I have really noticed a big change in the last year or two.

Sue Ingram

Postby Sue Ingram » Thu 26 Apr 2001 3:39 am

Dear Robert,

Obviously go along and check-out the situation with regard to having a graft, but PLEASE investigate Scleral lenses too and see if these would be any good for you - if you have pretty good vision in one eye then it would definitely be better to give these a go before taking the plunge and having a graft. Ken Pullum is the expert at Moorfields Eye Hospital in London - his website is http://www.sclerals.com. I am sure Ken can give you some advice via email if you cannot find any info locally.

Scleral lenses are the big ones which cover your whole eye -look pretty scary when you first see them but once you get use do them, not a problem. There are quite a few of us down this end of the country who wear them now - some even for 25 odd years. The advantage over RGP corneals (once you have got the hang of putting them in!)is that they are much more comfortable, dust does not get behind them and they don't fall out. Definitely an alternative to, and helping to keep, a graft at bay. Let us know how you get on. Good Luck! SUE

Robert Smith

Postby Robert Smith » Thu 26 Apr 2001 1:35 pm

Dear Sue

Thanks very much for the reply - nice to know that other people are coping.

I do have one major problem. My experiences of lenses were so awful that I do not think I can bear to even consider them again. They were extraordinarily painful and I spent the whole time wearing them desperate to get them out - and this was after the awful procedure of getting them in. I tried them three times - each time the optician/hospital said that they wuld be better BUT they weren't! It was actually an optician who realised that they were causing more problems than they were solving.

My feeling at the moment is that both options are awful - lenses and graft. What I did notice however on my last visit to the specialist was that my bad eye is now not just conical it is more like the moon's surface with no regular structure at all! Does this matter with these large lenses.

On the other hand I am finding the deterioration of my sight is beginning to get noticeable - though nowhere near as bad as others I am sure - all these problems are of course relative.

Robert


Oh the awfulness of choice!

Sue Ingram

Postby Sue Ingram » Thu 26 Apr 2001 3:37 pm

Dear Robert,

I understand your concerns - corneal lenses can be uncomfortable. I wore them for 25 years before one of my eyes decided not to tolerate them for 16/17 hours a day any more - I had got to that desperate stage where I could not see without the lenses, but could not bear wearing them. I now mix and match between the two types - see my speech on the Conference page.

However, the BIG plus with Sclerals is that they do not hurt. You fill them up with saline and then pop them into your eye. The only issue is that it takes some practice to get them in without air bubbles in the saline (these float around and stop you seeing so well)- it does not take long to practice the art. However, taking the sclerals in and out does not hurt.

The other advantage with sclerals is that it does not matter what shape or contour your cornea is as the scleral lens sits clear of the cornea - assuming that this would help with your bad eye.

All I am saying is it is worth looking into all the options that are open to you in order to improve your vision and comfort - I think all Kerataconics would agree with this. Once you have all the info, you can then make an informed decision as to the best way to go for you - obviously, everyone's choice is different depending on their work/lifestyle etc, etc. Hope this helps. If you have any more queries, let us know. Good luck. SUE

freddy

Postby freddy » Fri 27 Apr 2001 6:15 am

Robert

As someone who has just made the decision you are considering I know it is hard. I took lots of advice from the eye doctor and then read a lot. I am on this link and also the one Alex has mentioned which is run by the National Keratonconus Federation, and found both really heplful. The NKF is run out of Cedars Sinai University and has several Optomitrists (?) and Opthalmolgists who regularly post emails, and will answer questions.

What I find is so good is that these links do put you in touch with others who have KC, and as you say we hardly ever meet anyone else with it. It can be isolating and hard to understand as a result.

As to your decision I suggest you investigate and then weigh up the options for you in your circumstances. What suits one of us won't do for another.

Robert - Thanks for the advice about eye shields.

Can I ask another while I am here? For those of you who have had a graft did you ever choose to ask about your donor? I am so accutely aware that my present good fortune is the result of a courageous decision made by a bereaved family.

Freddy


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