UK Keratoconus Self-Help and Support Association

Hello everyone.

My fiance has just had his Keratoconus confirmed today. It was his second consultation with the eye consultant.

At the moment he wears glasses but these are not doing enough and could not read his computer screen this morning. He has been put on the NHS waiting list to go back to the low vision clinic and be fitted with contact lenses, I am not sure of the waiting time for this.

His employer did give him a 19inch flat screen (but I think he just asked the IT department). He is unsure about what to do re his employers I said to give them the sheets from here as a start.

Also with regards driving - as long as he can read the licence plate etc details from DVLA (well DVLNI as we are in NI) is he ok? And does he need to advise his driving insurance company and life insurance company?? Thankyou for any help/advice you may be able to give me.

Sorry to hear your fiance has KC too. Thing is, he knows now what he is dealing with and that will mamke a big difference.
The first step will be to find out if lenses can do the trick. For many of us, its a case of getting fitted and finding our vision is much improved and then moving on. In some cases, the lenses don't work out but I think this ony 10% or something. It can be a long wait for the lenses, getting fitted, having them made and so on but it is usually worth it.
On the work front, employers are bound to make reasonable adjustments for low vision and can even claim the money back from the government. In my case, I managed to get quite a few upgrades to my PC, which have been invaluable. That said, its probably worth waiting to see how the lenses turn out, your fiance may not need them.
As regards driving, a phone call to the DVLA is advised. As long as one can meet the license plate criteria, that's fine. When I phoned them, they made a note on my license and that was it. It is my responsibility then to make sure I am wearing my lenses when I drive. Another thing to watch is driving at night. Many of us suffer from glare and photphobia so driving at night can be a problem with all the street lights. The only lenses I find tolerable are rubbish at night, so I don't drive at night at all. Hope this helps, if not someone more knowledgeable than me is sure to help. Good luck with it all, both of you and don't worry. For many of us KC is a royal pain in the backside but we can get on with it after we've answered all the questions, got the treatment we need and so on...

NIBINKYNOO

Welcome to the forum. I am sorry to hear of your fiancee's diagnosis, but in the immortal words of Coropral Jones "Don't Panic!".

Also, do not allow yourself to be upset by the strings here. Many of the people who post on this site do so because they have come to an extreme point in their keratoconus, so it would be easy to miss the truth that for the vast majority of p[eople with Keratoconus the condition never really progresses to a point where it cannot be managed by the wearing of glasses or contact lenses.

Most people who need them find contact lenses easy enough to manage, however much they may begin by being bit freaked out at the prospect of inserting lenses into their eye each day.

So encourage your fiancee to take things as they come. There is no point in worrying too much about things that may never happen! Also, please tell her about the forum and invite her to join you here. I am sure that she will have a lot to share with others and will benefit from being able to offer support as well as receiving it here.

Yours aye

Andrew