Quicktopic posts: Mar 2001

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

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Sue Ingram

Postby Sue Ingram » Fri 23 Mar 2001 9:37 am

Hi everyone, I am afraid I am very much alive and kicking (see Phil's note)and have been avidly reading all the messages posted; its just that work has been manic this week - we had a Global IT Meeting where all the IT staff come in from the field - excellent but very tiring! Just no time for being Agony Aunt!

Simon Lawrence - I also only had KC in one eye for about ten years. I always thought if it stays that way, things will be OK. However, I eventually realised that I had it in my left eye too and asked them about it at Moorfields. They did say that it is quite rare for someone to only have KC in one eye. I know this is a bit of a downer, but I do wish someone had told me earlier; I always feel it is best to know the future, rather than be left in the dark - at least you can deal with it then, instead of walking around believing something else entirely. Hopefully, though, you might be one of the lucky ones who only gets it in one eye. Moorfields might be able to help you with actual statistics.

Gillian Gruder - Like you, I have always thought about my vision ever since I was able to drive (a long time ago now)- I am sure it is something we all worry about. Same as you, I am always hoping that my KC has stabilised and will not deteriorate any further. However, I try not to think about it too much. If and when the time comes that I am not allowed to drive, I will have deal with it then (and, it may never happen). It would be awful though - it will feel like your whole independence is going out of the window, won't it? I know Kate Love has just sold her car due to KC; maybe she can give us some positive thoughts on this one.

SUE (seriously still out there!)

christopher jackson

Postby christopher jackson » Fri 23 Mar 2001 9:53 am

gillian - I share your concerns when I'm having a negative day, but my optician says that everything is fine. I think that KC makes one very aware of eyesight frustrations but in reality there are thousands of drivers on the road who think they have good eyesight and (if tested) would fail the test.
Next time you change your car get an automatic and also one which has a raised seating position then you are not bothered with gear changes and the visibility is much improved - A JCB does the job well!
Hoping this helps and if you see a car going the wrong way down a one way street which is for buses and taxis only, it's me!

Kate Love

Postby Kate Love » Fri 23 Mar 2001 12:10 pm

Well I have to say I am glad that Sue is back - her silence was worrying!
Gillisn - as Sue said I have just sold my car. At first it felt like I had had my legs cut off and that I had lost my independence! There are lots of problems regarding work, but I am gradually becoming less stubborn and I do ask for lifts etc if I know its not too far out of people's way. Otherwise I just get a taxi -or the bus if there is one! I do my main supermarket shopping on the internet which saves a lot of time and effort!
Thanks to Sue Ingram i am going up to see Ken Pullum tomorrow to see if there is any possibility of piggy-backing helping with my vision. I know it might not work but it is worth a try.
When I feel really fed up about not driving I just think at least I don't have to worry about drinking and driving, and I would rather not drive than have an accident on my conscience. Having said that I do still get very fed up, bad tempered and frustrated about it all!!

christopher jackson

Postby christopher jackson » Sat 24 Mar 2001 1:21 pm

re Car driving.
When reading my comments of yesterday i feel they need further explaination as they are not meant to be frivolous.
When driving i also try to read number plates at varying distances and the results vary so much depending on the amount of light and the reflections. KC means that some days are better than others and whilst on bad days I am convinced that I would fail any eye test when i visit my optician he says my sight is ok and if and when it detoriorates 'that bridge can be crossed' and as we saw at the conference understanding of KC is improving which implies that management of the condition will also improve.
I am not encouraging anyone to drive with unsatisfactory vision but am saying that I am concerned with the number of ( non KC ) people currently driving with incompetent vision.
As Sue says whilst you comply to the law just carry on and if an optician queries your ability then the task is to explore all posibilities with different lenses - I find that sclerals are the best for driving.
Also take a test drive in a four wheel drive car, people carrier or a Mercedes A class and sitting high up you will get a confidence surge through the increased visibility which allows extra time to anticipate situations.
I promise not to put messages on the board on 'a demob happy' Friday afternoon again!

Sue Ingram

Postby Sue Ingram » Sun 25 Mar 2001 4:15 am

Christopher, Don't worry, I think we all knew what you meant in your first message. We need to have a laugh sometimes, otherwise it can all get a bit too much. We also need to put things into perspective sometimes too. Keep those cheery messages coming! SUE

christopher jackson

Postby christopher jackson » Tue 27 Mar 2001 2:31 am

Sue - Talking about perspective and knowing that you are well travelled you may find the attached interesting!

Subject: Perspective

If we could shrink the earth's population to a village of precisely 100 people, with all the existing human ratios remaining the same, it would look something like the following:

There would be:
57 Asians
21 Europeans
14 from the Western Hemisphere, both north and south
8 Africans

52 would be female
48 would be male

70 would be non-white
30 would be white

70 would be non-Christian
30 would be Christian

89 would be heterosexual
11 would be homosexual

6 people would possess 59% of the entire world's wealth and all 6 would be from the United States.
80 would live in substandard housing
70 would be unable to read
50 would suffer from malnutrition
1 would be near death;
1 would be near birth
1 (yes, only 1) would have a college education
1 would own a computer

When one considers our world from such a compressed perspective, the need for acceptance, understanding and education becomes glaringly apparent.The following is also something to ponder... If you woke up this morning with
more health than illness ... you are more blessed than the million who will not survive this week. If you have never experienced the danger of battle,the loneliness of imprisonment, the agony of torture, or the pangs of
starvation ... you are ahead of 500 million people in the world. If you can attend a church meeting without fear of harassment, arrest, torture, or death ... you are more blessed than three billion people in the world. If
you have food in the refrigerator, clothes on your back, a roof overhead and a place to sleep ... you are richer than 75% of this world. If you have money in the bank, in your wallet, and spare change in a dish someplace ...
you are among the top 8% of the worlds wealthy. If your parents are still alive and still married ... you are very rare, even in the United States and Canada. If you can read this message, you just received a double blessing in that someone was thinking of you, and furthermore, you are more blessed than over two billion people in the world that cannot read at all.

Sue Ingram

Postby Sue Ingram » Tue 27 Mar 2001 11:11 am

Like your message Christopher - makes you wonder what we moan about sometimes! SUE

Alex Perkins

Postby Alex Perkins » Tue 27 Mar 2001 4:50 pm

Hi

My name is Alex Perkins. I am 37 years old and live in Canterbury. For years I have suffered from keratoconis and have tried unsuccessfully to make my (two tier) contact lenses a success.

I JUST HAD SURGERY ON MY RIGHT EYE AND THE RESULT IS UTTERLY AMAZING!!!!!!!!!!!!!!!

The procedure is called Deep Lamellar Keratoplasty and was performed 6 days ago
by Sherar Daya (MD FACP FICS) at the Corneo-Plastic Unit at The Queen Victoria Hospital in
East Grinstead, England.

I already have greatly improved vision in the eye (right) and there is no pain - just a light irritation. He used tiny dissolvable stitches so there is no follow-up procedure and since 24 hours after the operation I have merely had to use two types of drops -Maxidex and Chloramphenicol.

As far as I can see Mr Daya is a genius! I have read about other peoples experiences and I cannot believe this treatment is not the preferred option world-wide.

Is this procedure carried out else where? Why can't I find any reference to it at any "K" websites?

(If you haven't already) Find out about it. It has changed my life.

Regards

Alex Perkins

martine

Postby martine » Tue 27 Mar 2001 6:01 pm

Hi Alex

My daughter's got it too and is in Canterbury! Early days for us, still fighting to get referral to Moorfields, but maybe you know something better...please contact me on email martinesy@btinternet.com. It seems there is quite a cosy group in Kent...Justine, Kate, Becky, Tony and Amanda and yourself and any others yet to risk this site. This site has kept me sane - I have never experienced so much genuiness and support from people I don't even know. Next year Becky and I will be at the conference - I have to meet you lot - you are great.

pp Andrew Nicholson

Postby pp Andrew Nicholson » Wed 28 Mar 2001 10:41 am

Deleted by author 28-03-2001 08:48 PM


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