UK Keratoconus Self-Help and Support Association

Hi All,

Ive just joined the forum today as I've had the KC for a couple of years now but only on Saturday was told some quite disturbing news about my eyes.

I've never worn glasses as its never been needed as my left eye the good one had 20/20 vision. But now this is really struggling and i have been told that ill need to wear glasses all the time from now on. Also my right eye the bad one, the KC has taken a right turn for the worse and the vision is from what I've been told around a year left before there is nothing more ref to site. As you can image a crazy weekend and still in shock now as I'm only 31.

Im awaiting to see the consultant any day now to see what they are going to do and many things have been told to me via the doctor and optician. I was wondering if you all could be so kind and put some of my fears at rest or advise me on the matter below?

1. The right is so bad that vision is going fast they are on about graft or replacement lens, can the KC come back after this has been done, as I've been it can?
2. Ive been told it can spread to the left eye in some cases?
3. Do i need to tell the DVLA or insurance company?
4. I work with vast amount of VDU is there anything special i can get to help my eyes apart from glasses?
5. Can my kids get it?

Sorry for all the questions I've been left a little in the dark and although the doctor and optician have jumped onto this within 2 days I'm a little overwhelmed with unanswered questions.

Thank you

Craig

Hello Craig and welcome,
I'll try to answer some of your questions. It's quite unusual for a KC eye to deteriorate quite so fast, though the fact that you have 20/20 vision in the other may have masked what was going on with the right.
1. Obviously the consultant will be able to tell you whether you need a graft or whether the vision in that eye could be improved with a specialist contact lens of some kind (most people with KC get a big improvement with contact lenses). A replacement lens is unlikely to help if your eye is still changing - it's really only usefull where KC is stable. Lots of us here have had grafts, and it is very, very rare for KC to come back in a grafted eye.
2. In many cases, KC does affect the other eye eventually, but often it's much more mild in the second eye.
3. It is advisable to tell DVLA and your insurance company, but it's very unlikely to affect your licence with your 20/20 vision in your good eye.
4. Have a look at the leaflets you can download from the home page of this site on KC and work www.keratoconus-group.org.uk/sitev3/publications.html
and get an assessment of your workstation to see what adjustments might help you.
5. Although the medics reckon there is a genetic component to KC, it's not common for it to be passed on to your children (researchers had difficulty finding enough families with KC in more than one generation for their studies).
And if you e-mail your postal address to anne@keratoconus-group.org.uk I can send you our information booklet on KC which will answer more of your questions.
All the best
Anne

The reason the genitic component is hard to analys is that it appears that about half a dozen genes need to come together that have a specific defect.

Where it has been found that KC is heriditory is where the familly group is genetically very similar such as popoulation groups that intermarry over time.

As far as using VDU, ensure that you have had a Display Screen Assessment in accordance with the Display Screen Equipment Regulations, if you use a PC for more than 50% of your work or something, it is something they are supposed to do by law. From this it is possible to determine what sort of assistance is required to make your day to day work easier. A common one is a large monitor where the colours, contrast etc are customisable. Where there is a need to look at digrams tec, access to a photocopier or printer that allows printing to A3 helps.

Wow cheers guys never thought someone would come back to me so quickly.

Thank you for answering my questions ref to your answer Anne on the good eye this is also not good at the moment. They have not said as yet whats wrong but the vision is not perfect so they want me on glasses asap. So it does worry me telling the DVLA just yet as i need my car to get to work.

Anne email sent and again thank you.

Garethb cheers for coming back to me on the VDU i work in IT and communications and spend my life looking at a several screens at once to code monitor data traffic. So if a bigger screen will benefit then please let me know as ill speak to work about it?

Cheers all for coming back.

Craig