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Sue79
Newbie
Newbie
Posts: 3
Joined: Sun 10 Apr 2011 3:55 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

New to KC and Forum

Postby Sue79 » Sun 10 Apr 2011 4:25 pm

Hello!

I am 31 years old and i have been told that i have KC about 6 months ago. Since then my life has been a nightmare, i have constant headaches, pain in my eyes, don't see well with my glasses and driving (I think i shouldn't drive, my vision is 20/60 or 20/65 and i cant see anything clear is like everything is a blur) or just stepping outside the house is awful as i can't bare the bright light fro the sun, from the cars from anything at all.
I have been told that i will have to wear special contacts to improve my vision, i have already tried 4 different ones(special soft ones made just for KC patients) and my eyes don't accepted them at all, or they keep moving at all the time, or i just can't keep them in the eyes or i just can't open my eyes if i am wearing them....
I have tried RPG ones but is the most painful and awful thing to my eyes, last friday went to the hospital again and the doctor told me that i have to try and put the RPG has this is the only contact that will help my vision. In order for keep them on my eyes enough time to measure the fitting and see how they were sitting in the eye they have put some sort of drops that work as anasthesia, it stings but i didn't felt them for about 5 minutes, after that, awful....

I have to go back in 4 weeks time to try the contacts again but this time with my prescription on it, i am worried because i have been told that if i can't wear the contacts there is only 2 solutions, one is the cornea transplant or graft i think is the correct name(that i am afraid to do) and the other is inserts or intacs but this last one is not covered by the NHS so i cannot afford it.
I need some help to deal with all this but no one seems to be able to help me.
I drive only to take and pick up my husband from work as at this moment he is the only one working(if i could i would not drive as i think i am not that safe on the road), i do not get any benefits?JCA at all (just saying this before someone says or thinks "another one in benefits") and apart from the constant pain, the low vision and the fact that i am afraid of losing my vision the only thing i want is some advice/support in understand KC.
I wish i had more support from he NHS or even my GP, but to be honest my GP knows less than me about KC....

And just out of the blue having a vision (with glasses) of 20/60 is partially blind? Just asking because people keep tell me that i am partially blind and i do not know if it is true...

Sorry for any bad spelling or even missing words but i can't see very well the letters...

Sue79
Newbie
Newbie
Posts: 3
Joined: Sun 10 Apr 2011 3:55 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

New to Forum and KC

Postby Sue79 » Sun 10 Apr 2011 8:17 pm

Hello!
I found out about last August that i suffer from KC. On a regular visit to the opticians i told him that my vision got worst out of the blue and i was having constant headaches and i couldn't drive properly. After examination i was advised to see the hospital has they though i had KC. 3 months later went to the hospital and it was confirmed. No one explain anything to me at all, i have made questions, i have tried to to ask them so many things but i never get an answer about it, The only thing they told me was that my headaches are normal, that the fact that i can't see very well even with my glasses on are normal and the best solution was change for contacts.
Has i had tried RPG before , around 5 years before, and i didn't manage to keep them on my eyes, the doctor suggested i tried a soft contact ( made for KC patients) i wasn't sure about it but i decided to give a go because my vision is sacred for me. Since then and until last Friday i have tried different contacts always soft, but none of them is ok for my eyes has the fitting is bad and it was drying my eyes a lot causing pain.
This past Friday (8th April) the doctor said that they couldn't try it more because they didn't had any more scope on those contacts. So she said i had to try RPGs again. Has last time i tried them its was painful and awful in order for the doctor to see witch ones would fit better they have put some drops on my eyes, like anaesthesia, i have to be honest and say that i din't felt anything, not even the doctor fingers touching my eyes, but after 5 minutes i started feeling some light pain on my left eye. I have told the doctor but he didn't care, he has ordered the contacts and in about 4 weeks time i, once again have to travel 52 miles (return) to the hospital to put the contacts so the doctor can see how they fit in 5 minutes and then send me home with them if they fit noy taking any notice if i fell comfortable with them or not, if they don't fit i have to wait another 4 weeks for another pair...
Im ok with the waiting, sort off, my problem is that they do not tell me anything about my KC, i do not know if is severe, moderate, mild or any other thing, i do not know what can i do to avoid getting worst or even if it will get worst with time, the only thing i know is that my vision with my prescription glasses on is 20/60 or but this gets worst when i am outside, by outside i mean walking around town, driving , etc...
I have constant headaches, i have quite a few times tears rolling down my eyes, other times my eyes are really dry, if i am at home with no lights or minimum lights as possible i am fairly ok but as soon as i step outside is a nightmare, to drive i have to wear sunglasses with prescription and even with them i have to sort of closing my eyes slightly to see better - i do think i should not drive with my vision like this but no one gives me an answer, so... - walking around town is the same, can't see a sign in front of me, i have to be near the sign to be able to read it. Computer is the same, i have everything zoomed so i can read, tv if there is subtitles i can't see them most of the time..
I just need some help/advise/support but can't get it from the hospital or even my GP...
I am scared that i will lose my vision one day and at this moment what scares me th emost is the fact that i am unemployed, with no benefits/JCA at all and only my partner working, if i am right and i am not able to drive with my actual vision, my husband has no way of going t work, has to get to work he can manage but to return home at midnight the only chance is taxi that will take half of our only income, his wages....

Can anyone give me some lights about KC in the UK, i have read everything i find on the net, but my head is getting a bit confused about it .

Sue

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: New to KC and Forum

Postby Andrew MacLean » Mon 11 Apr 2011 7:50 am

Sue

Welcome to the forum!

I have moved your post to the General Discussion Forum, and I have merged the other, similar topic that you launched at the same time.

It is not uncommon for it to take a bit of time to identify the right lens for each patient. One of our Optometrists has described keratoconus as a 'bespoke' condition. All the tiny variables in the condition make each of our corneas almost as individual as finger prints so that a lens that suits me might not suit another person with superficially similar KC. Keep trying with the lenses; if you find a style and material that suits you, the difference in your vision will be amazing.

There are other options for the treatment and management of your condition, but the plus side is that you are beyond your teen years and as we get into our 30's it seems that the progression of KC slows down.

For now, it is possibly right that you should not be driving. Speak to your ophthalmologist. It may be that if you cannot wear lenses and your glasses do not give you the correction you need, your ophthalmologist may be able to give you access to other sorts of support.

Every good wish.

Andrew

Every good wish.

Andrew
Andrew MacLean

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Anne Klepacz
Committee
Committee
Posts: 1965
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: New to KC and Forum

Postby Anne Klepacz » Mon 11 Apr 2011 10:42 am

Hello Sue,
Just to add that the KC Group produces various information I can send you (basic information booklet about the condition, DVD of our last conference which covered all the options for KC). All you need to do is to e-mail me your postal address anne@keratoconus-group.org.uk
All the best
Anne

Sue79
Newbie
Newbie
Posts: 3
Joined: Sun 10 Apr 2011 3:55 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: New to KC and Forum

Postby Sue79 » Mon 11 Apr 2011 7:04 pm

Thank you for that.
I will send an email asking for that information.

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Lynn White
Optometrist
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Posts: 1402
Joined: Sat 12 Mar 2005 8:00 pm
Location: Leighton Buzzard

Re: New to KC and Forum

Postby Lynn White » Sat 16 Apr 2011 6:12 pm

Hi Sue,

Keratoconus varies in the way it affects people, so it is a difficult to give general advice without seeing you. As you are on benefits, then you are really tied into the NHS system as far as consulting practitioners is concerned, so I cannot even suggest you go and see someone for a private opinion.

What I will say is that grafting should be the absolute last resort and not undertaken lightly - certainly not because your hospital has difficulty fitting you with contact lenses. If they cannot fit you, then they should first offer you the opportunity of being referred to another centre. It is most unusual for someone not to tolerate soft lenses, so it may be that another centre may well be able to do this.

If you want more advice or explanations of the condition, please do PM me.

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

email: lynn.white@lwvc.co.uk


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