Newbie

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

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Moderators: Anne Klepacz, John Smith, Sweet

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CrippsCorner
Forum Stalwart
Forum Stalwart
Posts: 377
Joined: Wed 02 Oct 2013 3:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Essex
Contact:

Re: Newbie

Postby CrippsCorner » Wed 23 Apr 2014 7:52 am

Oh yes, sorry, when I read 'lenses' I automatically think of contacts! Sorry I can't help with glasses. I actually work for the NHS and was able to get about £100 paid towards mine when I could get away with stating they were purely for reading at the computer screen... don't think that'd fly now though!

tigger7878
Newbie
Newbie
Posts: 8
Joined: Fri 18 Apr 2014 8:07 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Newbie

Postby tigger7878 » Sat 26 Apr 2014 4:23 pm

Hi I'm getting my contacts through nhs for 105 for the pair would be 500 at the opticians it's the glasses ones I'm.struggling with and yes I get the free eye test and have done for a while and the voucher of 14 pound. I'm looking into paying outright for contacts and using current dd for the glasses hopefully I can do it that way xxx

tigger7878
Newbie
Newbie
Posts: 8
Joined: Fri 18 Apr 2014 8:07 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Newbie

Postby tigger7878 » Tue 29 Apr 2014 4:21 pm

Hi all, I'm having a few problems at the moment still not been seen by hosp and eye sight getting worse. My prescription has got worse over the last 3 weeks. 3weeks ago I was -9.5 & - 10.5 for contacts now after emergency app I'm -10.5 & 11.5 right eye still blurry I can't get specs ordered until my eyes stabilise. I'm now off work and can't drive. Feel really down when's it gonna stop xxx

Clare
Newbie
Newbie
Posts: 7
Joined: Sun 20 Apr 2014 8:21 pm
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: Guildford
Contact:

Re: Newbie

Postby Clare » Tue 29 Apr 2014 7:30 pm

Hi Sarah,

I'm so sorry to hear that you're eyesight is degenerating this rapidly. I know how scary and frustrating this feels.

Sometimes ketatoconus stops progressing by itself, but in many cases it doesn't. If you're in your mid 20s and it hasn't yet stopped then I think that it won't do so naturally and you probably need to look into the possibility of getting crosslinking to stop your eyesight from deteriorating further in the future (because thankfully keratoconus can often be stopped through this surgical intervention). The sooner the better as the operation can only go ahead if your cornea is above a certain level of thickness. Is this something you've considered before?

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Anne Klepacz
Committee
Committee
Posts: 2265
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: Newbie

Postby Anne Klepacz » Tue 29 Apr 2014 7:33 pm

It's tough when you're as shortsighted as that, even if the KC itself is relatively mild. Hopefully the new contact lenses will sort things out for you when you eventually get them. Do you have a sympathetic employer? Do have a look at the leaflets on KC and work that you can download from our home page if you haven't already done so.
http://www.keratoconus-group.org.uk/sit ... tions.html
Progression in KC can take a sudden spurt sometimes but many people also find their vision varies from day to day or week to week so it can be hard to know how significant changes are.
Coping with the crisis times in KC isn't easy, but hang on in there. Lots of people here have been through similar hard times and come out the other end so at least you're among friends who understand.
All the best
Anne

tigger7878
Newbie
Newbie
Posts: 8
Joined: Fri 18 Apr 2014 8:07 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Newbie

Postby tigger7878 » Tue 29 Apr 2014 8:16 pm

Thank you for your support. I work in nhs so not sympathetic lol. I was diagnosed in my early 20s and I'll be 36 in Aug this is the first prob I've had since being diagnosed. Thank you for the link I'll go on laptop tomorrow and print it off in the morning xxx

tigger7878
Newbie
Newbie
Posts: 8
Joined: Fri 18 Apr 2014 8:07 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Newbie

Postby tigger7878 » Tue 06 May 2014 9:44 am

So far hosp has lost referral so.still not getting anywhere. Being retested for visual field test today as I had 3 grey areas last week. Hope there is improvement today.

mattjbelfield
Newbie
Newbie
Posts: 5
Joined: Tue 09 Sep 2008 11:17 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: Newbie

Postby mattjbelfield » Fri 23 May 2014 11:03 am

tigger7878 wrote: I've now been deteriorating over the last 2 months and am now having to go on to the hybrid lens as I've had shape changes. I'm worrying a bit about this and am scared I won't get on with them. Can anyone give me there experiences on these lenses.


Hi Sarah,

I've been wearing 'synergeyes' (duette I think - http://www.synergeyes.com/ ) hybrid lenses for the past three and half years or so and find that they are excellent for my vision and very comfortable as I sometimes work in dusty conditions. The only downside is that they require replacing every six months (they start to feel very gritty and dry if you don't) and not to wear them for too long during the day, but that's a small price to pay for good vision. I used to hate night driving with previous lenses and find these to be so much better that it's no longer a problem. My experience so far is that I'd highly recommend them 8) .

Hope that helps.

Matt.


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