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

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Steven Williams
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Hiya

Postby Steven Williams » Wed 11 Oct 2006 11:05 pm

Firstly many thanx to those who had the vision to set up a much needed self help facility for KC sufferers as well as those who contribute with advice and support.

I wish there had been something like this when I was diagnosed with KC in both eyes in my final year at University in 1983.

Its a while since I first registered on here and this is my first post as I have been battling to survive in the matrix for the last five years as the KC has progressed and I now will have to do something to improve my vision in order to be able to drive and remain employable.

I have been trying contact lenses (RGP) for over a year now at Manchester Royal Eye Hospital and have not been able to get a lens
yet to remain in position on the cone or be comfortable to wear, can tolerate them no more than a couple of hours! The guy who has been endeavouring to successfully fit me with lenses has been Mr John Bullock however he retired last month and my last appointment was with a new person who has had to start from scratch because she appeared unable to follow Johns notes.

You would think after 23 years of living with KC I would be able to provide the community here with some positive advice and where to go receive the expert treatment and care required but sadly I cannot.

I have found the whole healthcare system to be unable to offer anything for me to date.
The NHS system is just a cattle market unable to allocate sufficient time or keep to appointment times (when I go to MREH its almost a full day......I leave at 9am for an 11am appointment, am usually seen early afternoon and arrive home around 4pm)

The alternative:- private treatment would cost a fortune based on my experience over the last two years. Many street opticians would not touch KC sufferers with a bargepole on the NHS system for commercial/high risk reasons.

IMO there are two parts to the suffering of KC. The physiological and the psychological. From my negative experience the UK healthcare system totally ignores the latter. As a patient
I ask specific questions and usually receive vague answers.

So were are the KC specialists/specialist KC lens fitters near to my home address who are willing and able to offer the expert healthcare support I now need to be able to continue functioning as the breadwinner for the family? Is MREH the best place in the NW?

I was hoping that an active local self help KC group would have been established in the NW region by now!

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John Smith
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Postby John Smith » Wed 11 Oct 2006 11:17 pm

Matthew,

Welcome to the forum!

We do have a local group in Manchester, but it's only had one meeting so far. Keep an eye on the site (especially the scrolling ticker on the front page) for dates of forthcoming meetings.
John

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GarethB
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Postby GarethB » Thu 12 Oct 2006 7:32 am

Steven,

This time last eyar I had trouble getting a lens to saty where it should. My optom battled for six months and between us we came up with a solution.

I asked about the composition of my tears to he looked further and confirmed my thoughts that they were not performing as they should. We thrashed around some ideas and he called his friend from dermatology. The result was that I was advised to use eye drops which took another couple of months to find which worked the best. For mee it is Systane, for others it is Blink or Celluvisc. For the first month or so I had to use the drops every couple of hours which meant having to take the lenses out at regular intervals. For a nother medical condition I was advised to drink more water andcut back on the fruit juices and coffee. Never drank much coffee in the first place, but the fruit juice has been replaced by actual solid fruit.

Now I only use the eye drops just befoe putting y lenses in and just after removing them. I now average 12 hours lens wear where as before 2 was an extremely good day.

Prior to that I did make some changes to my work environment with respect to where I sit in relation to the air con and radiators. This comes under employers having to make reasonable adjustments for our cindition which is recognised as a disaability. (Take a look at some of the fact sheets available for download on the home page).

I would say for me I have had to make at least a dozen minor changes at home and work that have had the combined effect of giving me extremely good and comfortable lens wear.

Many here have had psycological problems as a result of living with KC and had treatment through the GP. Mine was very good with this.

However with most things it would appear to be a postcode lottery. My ocal hospital is always running late but that is because they do there best to give each patient the time they need to provide the best treatment.
Gareth

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Steven Williams
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Postby Steven Williams » Fri 13 Oct 2006 10:51 am

Thanx for that guys I will look out for future meetings in the NW region.

Some good relevant advice there Gareth. Yes I do appear to suffer from dry eyes and because of this condition it encourages eye rubbing which of course if its done when the lenses are in moves them off the cone! A viscious circle!

I mentioned my dry eye problem to John Bullock and he gave me "sno tears". No instruction/advice of how to use it was provided and as a matter of fact I have received hardly any advice, training, regarding fitting the lenses and the cleaning, hygene!

You would expect the specialists (MREH and optometrists) to be taking the lead but sadly they are not.

At my last consultation they had sent away for another set of lenses, but only before getting me to pay just less than £100 for the lenses.
I protested to this as I said the change of lenses was due to their inability to provide me with a lens which was fit for purpose. No money no lenses was the final decision so I had no alternative but to pay up again!

I would be willing to travel anywhere in the country to get the expert treatment and attention I need but as I asked in my previuos blog who and where do I go to?

Self help appears to be the only way forward for me at present.

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jayuk
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Postby jayuk » Fri 13 Oct 2006 11:23 am

Steven

I hear where you are coming from....and Im tempted to say "welcome to the real world!".....but that wont help!

Majority have experienced what you have and we all would agree that its very frustrasting!.....Ive PM'd you with some help...

Hopefully we can help you further

J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP

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Steven Williams
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Postby Steven Williams » Fri 13 Oct 2006 11:55 am

Thanx for that Jayuk. I've pmd you with the details.

"welcome to the real world" yep Jayak based on my life experience for KC people I can see were you are coming from with that statement, your telling the truth comrade and how it is. Sad but true.

As well as self help there are people though out there who can help us all, we have just got to find them and that is my quest!
Last edited by Steven Williams on Mon 16 Oct 2006 11:56 pm, edited 1 time in total.

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Andrew MacLean
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Postby Andrew MacLean » Sun 15 Oct 2006 1:05 pm

Steven

All the best. Many of us have been through all this.

I do know that in the Glasgow area there are a number of options for KC sufferers to be fitted with lenses:

1 Some high street optometrists offer an excellent and expert service. Others do not.

2 Hpspitals have expert staff, and those who are referred to hospital optometrists receive the highest standard of professional attention.

3 The Glasgow Caledonian University Department of Vision Sciences offers an expert service. This is part of the education given to students, but fitting is overseen by lectureres and professors.

I do not know about the North West of England, but I'd guess that there may be an eqivalent department in one of the Universities in Mancherster.

All the best. Stay in touch.

Andrew
Andrew MacLean

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Steven Williams
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Posts: 316
Joined: Tue 18 May 2004 10:48 pm
Keratoconus: Yes, I have KC
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Location: North Lancashire

Postby Steven Williams » Mon 16 Oct 2006 11:54 pm

Thanx for that Andrew, sounds like Glasgow is well served for KC care.

The Manchester Royal Eye Hospital is next to the University of Manchester and they do provide work experience for the students. I discovered that when I was referred to the hospital by the University doctor I was at in my final year. I was actually examined by a student who couldnt work out what the problem was and his mentor came over and diagnosed KC. The students response I will never forget, "wow thats fabulous" and he was full of enthusiasm. Needless to say I did not share his enthusiasm or appreciate his bedside manner, nor did his mentor the coloured consultant specialist!

There are over 1000 members registered on the forum and presumably all are KC sufferers, some though are from overseas. There are a number in the North West and sadly some registered members do not reveal their location which presumably accounts for why there are so few self help KC groups around the UK.

To date I have got one recommended optomestrist, thanx Jayuk.

Does that mean that hardly anyone on here is satisfied with the KC treatment/care they are receiving and are just not either willing or able to help or provide an opinion?

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Alison Fisher
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Postby Alison Fisher » Tue 17 Oct 2006 6:04 pm

Hi Steven :D

I was diagnosed a few years before you and like you I feel I have limited advice to give fellow members here. Back in the 80's I found information all but impossible to come by and so had little understanding of what was happening to me. This forum has increased my knowledge about KC ten fold.

I can't comment about treatment in my area as I am so out of date with how pre graft KCer's are looked after. Post graft I've not really any complaints, well not serious ones anyway.

As for students, well I've never forgotten the two that looked at one of my grafts the week after it was done. They were really shocked at what they saw through the slit lamp and several expletives were uttered. Until the consultant filled them in they couldn't figure out what I'd had done. I wasn't sure whether to be amused or worried. I wonder what he said to them after I'd gone, and I also wonder where they are, and what they're up to, now.
grafts in 1992 and 1996


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