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

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gill501
Contributor
Contributor
Posts: 16
Joined: Thu 10 Feb 2011 5:44 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Ayrshire

New here!

Postby gill501 » Fri 11 Feb 2011 2:35 pm

Hello all,

I came across the website and forum yesterday on return from a check up visit to the Opticians. I'm a 32 year old woman from West Coast Scotland, and on having being tested in 2008 and being told I have 20/20 vision I was shocked to learn yesterday that I probably have Keratoconus in my right eye. I suppose I knew something wasn't right as the last 4 or 5 months I have had "blurred" vision in the eye but stupidly I thought it would go away or that I just needed glasses, now I am kicking myself that I didn't see someone straight away when it started to occur.
The optician was brilliant and spent nearly an hour yesterday explaining about the condition, the treatment and unfortunately the worst case scenarios too. I am now (through no fault of the optician!) pretty scared about whats to come!
Is it just me or do you all beat yourself up about this when first diagnosed, all day and night I have been going through the "what if", "if only I had..." questions thinking that it has been something I have done or caused. As far as I know there are no members of my family that have Keratoconus or any similar eye condition.
It also doesn't help much when I have a fiance who has a huge phobia of anything eye related! lol So i am hoping all of you in the forum can put my mind at ease whilst I await the appointment with the specialist to see what the verdict is. Looking forward to chatting with you all,

Gill :)
Inside this body lies that of a skinny lady.... But I can usually shut her up with chocolate!

gill501
Contributor
Contributor
Posts: 16
Joined: Thu 10 Feb 2011 5:44 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Ayrshire

Re: New here!

Postby gill501 » Fri 11 Feb 2011 7:37 pm

Oops i'm sorry it appears my post posted twice! :oops:
Inside this body lies that of a skinny lady.... But I can usually shut her up with chocolate!

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Anne Klepacz
Committee
Committee
Posts: 2063
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New here!

Postby Anne Klepacz » Fri 11 Feb 2011 7:48 pm

Hi Gill and welcome!
Please stop beating yourself up about having KC. It isn't due to anything you have done or haven't done so there's no 'if only I' about it! 32 is actually pretty 'old' to be diagnosed with KC -it's most often diagnosed in the teens or early twenties - and the medics seem to think that the later it develops, the less likely it is to progress to what your optician described as worst case scenarios. And the options for KC are expanding all the time with new ways of managing the condition. Obviously your specialist will be able to tell you more once he/she has examined you. In the meantime, don't panic. Lots of people with KC manage very well with contact lenses of some description and live life to the full!
If you'd like a copy of our basic information booklet about KC, e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you a copy.
All the best
Anne

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Anna Mason
Chatterbox
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Posts: 196
Joined: Wed 17 Mar 2004 9:23 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Gloucestershire

Re: New here!

Postby Anna Mason » Thu 17 Feb 2011 9:09 am

Hi gill501 I sometimes think the current scenario where the eye person you see tells you all the worst is really great for some people and for others its a complete !!!!!! nightmare. Firstly in the words of that Great Hitchikers Guide DONT PANIC like a lot of other things in life KC can be a burden and you can have major issues and then on the flipside of the coin you can just be aware its an eye condition which makes Contact lens fitting more of a challenge.

Send your Fiance to me and I will give him a good talking to sorry if he cant cope with eye things but there are far worse things in this world for Fiances to cope with. Just tell him he doesnt have to deal with it just hold your habd if you are feeling down.

You will encounter some wonderful helpful people on this forum but just remember that people who come a forum come in different flavours those who want to help, those who are having the worst time and need help and support and all the varieties in between.

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melissa
Chatterbox
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Posts: 257
Joined: Tue 18 Dec 2007 3:08 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: South Africa

Re: New here!

Postby melissa » Fri 18 Feb 2011 10:18 am

Hi Gill501...
we have all felt that way before... and it isn't your fault.. just bad luck i say. try not to worry about the worst case scenario... from experience i know that the things I have feared the most are not so bad if/when they actually came around. get all the information you can now about YOUR specific condition- and then take it from there. i was diagnosed whilst living in London and i was single and far from my family and very very scared... but somehow i found a way through it all and you will too.... ask lots of questions on this forum and i would suggest taking a list of questions when you go to see your specialist- so that you remember to ask...
good luck

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Lynn White
Optometrist
Optometrist
Posts: 1400
Joined: Sat 12 Mar 2005 8:00 pm
Location: Leighton Buzzard

Re: New here!

Postby Lynn White » Fri 18 Feb 2011 8:51 pm

Hi Gill501

To be absolutely clear, Gill, it would not have mattered if you had seen someone straight away. It takes a while to confirm that a problem with vision is in fact KC. As its a relatively rare condition, it is not the first thought in anyone's head if your vision is blurred. There are many more likely conditions it could be.

The usual way of managing this is with contact lenses - but that is what it is - management, not treatment.

There is Corneal Collagen Cross Linking available (mainly privately) that can halt the condition but it is not really advisable to jump into that until you are sure the condition is progressing.

Don't worry, lots of people have eye phobias... its a natural reaction due to the mind's over protectiveness of the eye in general. Most people work through this and become quite the expert on eye conditions! :)

If you want any more technical answers to your queries, please feel free to pm me

Lynn
Lynn White MSc FCOptom
Optometrist Contact Lens Fitter
Clinical Director, UltraVision

email: lynn.white@lwvc.co.uk

Teresa D
Contributor
Contributor
Posts: 24
Joined: Mon 22 Nov 2010 1:55 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: New here!

Postby Teresa D » Fri 18 Feb 2011 11:39 pm

Hi Gill501,

I was around the same age as you when my KC was diagnosed and I've been living with it now for about 8 years. When the KC was first diagnosed, I was scared, blamed myself and kept asking, why me? My twin sister has KC too, although not as advanced, and her son is also being monitored in case it happens to be hereditary. At first, I was adamant that I would do anything other than have a corneal graft, yet I ended up having one in July last year! My only advice is to try not to panic and just kind of take things as they come. There certainly seems to be more options around now than when I was first diagnosed. You will have good and bad days, but you must try to remain positive, rather than let it completely take over your life. My fiance is very supportive, but has a bit of an eye phobia too, but he does as much as he can to help me out and cheers me up on the bad days.

Good luck and do let us know how you get on. :)

Teresa


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