Confused.com

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

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Skyline Nelz
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Joined: Wed 14 Apr 2010 9:41 pm
Keratoconus: Yes, I have KC

Confused.com

Postby Skyline Nelz » Wed 14 Apr 2010 10:26 pm

Hi all. Im new to this I became a member today whilst trying to research on the internet about KC i was diagnosed that I had KC when i was 15 im 23 now. Ive had it in my left eye for 8 years but last year it started up in my right eye.
I feel like the NHS use me has a guinea pig because they always telling e more and more bad news on each visit and the waiting list for everything i disgusting,

Apparently my left eye is really bad and they say the hard CL wont do the job no more. what other options are there about there and which one d people recommend. Is grafting reliable? does it lead to blindness in middle age? im really at the moment.

Im just fed up with the whole thing never ending :(
im so glad i joned this group ive never really come accros anyone with KC........

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Andrew MacLean
Moderator
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Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Confused.com

Postby Andrew MacLean » Thu 15 Apr 2010 6:14 am

Welcome to the forum!

From what you say, it may be time for you to think about a graft, although there may still be some mileage in asking your optometrist about other lens options. I waited until I was legally blind before I had my first graft, and while I do not regret the long delay (which was my choice) I do not recommend this as an ideal strategy for others.

I am now 60 with two grafts and have better than normal vision. I drive and have a full time job. Others, I know, have not fared so well.

Every good wish

Andrew
Andrew MacLean

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melissa
Chatterbox
Chatterbox
Posts: 256
Joined: Tue 18 Dec 2007 3:08 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: South Africa

Re: Confused.com

Postby melissa » Thu 15 Apr 2010 6:46 am

hi skyline... welcome to the forum. you will find a lot of answers and honest opinions on this site- as well as friends who understand your frustrations... there are often some wide varying experiences, but that is what makes it a valuable source of information.
RE: grafts... everyone has a different experience.. my graft is one of the success stories and i get 6/9 vision without correction in that eye, and better than 6/6 vision with glasses... i have never heard of it causing blindness in middle age. there is always the risk of complications, but try not to worry about being blind.... there are many solutions out there...
most of the people on this forum would recommend that you wait until you tried everything else before having a graft....
my vision was damaged by scarring, and it affected my ability to do my work, and that made the decision clear for me.... but the decision will always be yours...
perhaps search the site for graft threads...
let us know what you decide...

Lizb
Forum Stalwart
Forum Stalwart
Posts: 331
Joined: Sun 02 Dec 2007 5:09 pm
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: Preston, Lancashire

Re: Confused.com

Postby Lizb » Thu 15 Apr 2010 7:59 am

even if hard lenses arent an option, there are a number of other lens options for KC available that are worn succesfully by people who have been unable to get on with hard lenses. Some of these lenses are Synergyes, Kerasoft, piggy backing soft lenses with RGP, sceral lenses to name a few (am sure that some of the some of the experts will be able to name a few more as well).

You dont say why hard lenses arent an option any more for you, is it dry eye? or no vision? uncomfortable to wear?

Yes a graft is the final stage, however depending on how severe your KC is there are other options available.

As to the future, yes you can become "registered blind", however this doesnt necessarily mean that you are completely without sight, it just means that it is easier to get help that you need to carry out day to day tasks etc.

As to work environments, KC can be classed as a disability as it can impair your ability to carry out your day to day job - employers have legal responsiblity to treat you fairly and ensure that you have the necessary support to complete your roles. My employer allowed me to choose the best place to sit when we moved offices, has put up spot lights as well as tube lighting, bought me a bigger screen, spoke with our specialist software provider to make things easier to increase font sizes etc all because on some days my vision isnt as good as other days...

I work fulltime, i drive a car, ride a motorbike, take holidays all over and dont generally let my KC affect my life. however there are some allowances i have made to my life in case of bad vision days.
Life is too short for drama & petty things!
So laugh insanely, love truly and forgive quickly!


I´m not strange, I´m just not normal

Every sixty seconds you spend angry, upset or mad is a full minute of happiness you never get back

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Andrew MacLean
Moderator
Moderator
Posts: 7703
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: Confused.com

Postby Andrew MacLean » Thu 15 Apr 2010 12:27 pm

Just for the sake of clarity, in the United Kingdom anyone whose vision is less than 6/60 (20/200) is legally blind. This is not a slight inconvenience; if you cannot see as well as 6/60, you do not have useful eyesight.

Andrew
Andrew MacLean

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Anne Klepacz
Committee
Committee
Posts: 2308
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Confused.com

Postby Anne Klepacz » Thu 15 Apr 2010 1:43 pm

Hi Skyline
Just to add that as well as running this website, we have a postal mailing list membership who get regular newsletters, DVDs of our conferences and other info. Our most recent newsletter had an article about all the different contact lens options for KC which you might find useful. If you e-mail your postal address to anne@keratoconus-group.org.uk I'll put some info in the post to you.
All the best
Anne


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