UK Keratoconus Self-Help and Support Association

hi im new here and look for help and info, my mate suffers from Keratoconus and has recently been told he has to have surgery and we been looking at infomation but seem to be getting no where every one and site gives different solutions and outcomes. then i found here and thought you lovely people could help. he has been told it would be over 12months b4 surgery but that seems awfully long to me considering he seeing less and less and they told him to stop wearing his right contact in the mean time which is decreasing his vision even more. he worried he may have to give up his job. i was wonder if you lot had any advice and help any would be helpful

Hello cato4eva and welcome to the forum.

I am afraid that you give us very little information; for example you do not say where you are, or where your mate is receiving advice or treatment.

so, if you will allow me to make some assumptions, let me say that if you are in the United Kingdom, then the position of disabled people at work is protected by law. It may be, of course, that the type of work involved is in some way exempt from the protection provided by the normal employment law of the UK, but assuming it is not, the employer must make any 'reasonable adjustments' to the workplace to enable the disabled person to continue at work.

In my case this meant that my employer along with the Access to Work Team at JobCentre Plus equipped my workspace with specialist equipment that meant that I could continue to work even although I was registered blind.

It is hard to say whether the year gap is reasonable or not as we do not know any details of the stage of the condition, or even what sort of surgery is anticipated: transplant, CXL (crosslinking), or Intacs.

Perhaps the most shocking thing is that in this post I have used the term "disabled" to describe your mate. Often the most difficult thing is for us to accept this as a description of ourselves or of the people about whom we care. Perhaps it was partly due to my own reluctance to acknowledge that I was disabled that I continued to postpone any surgical interventions until I was clinically blind. I now have good sight and am able to drive again.

Maybe the year is to give time for these adjustments to be made?

If you are in the UK, it is extremely likely that there are others here who attend the same clinic or even see the same specialist. Even if you are outwith the four main UK jurisdictions, it remains a good possibility that there are others posting here who know the local conditions. We have connections in parts of the United States, The Republic of South Africa, many European countries, Australia and Dubai! (to name but a few).

One final thing; even if some lenses are no longer suitable for your mate's condition, there are others that could be tried. For example, after RGP corneal lenses have stopped providing the comfortable correction that we all hope for, many people go on to try hybrid lenses, or piggy-back lenses, or soft lenses (of which kerasoft 3 is a recent new sort), mini-scleral lenses and even scleral or haptic lenses.

Please assure your mate that none of us needs to be alone with this condition;

All the best

Andrew

hi sorry for lack of info before

we come from blackburn in the uk. he was diagnosed when he was 14 he is now 28. his condition has got gradually worse over the years but has seen rapid deterioration in the last 2 years. due to the severity of his condition at 18 he failed the visual acuity part of his driving test thus has never driven, as yet he is not registered disabled. he has worn rgp since diagnosed at 14. at a recent visit to his specialist he is being refered to a surgeon at the local hospital. at this point his main concerns are:

recent high percentage of absences at work and managements scepticism he work shop floor at tesco.

Were I him, I'd speak to the ophthalmologist about the possibility of registering as a partially sighted person. This would immediately gain him extra protection at work.

Only a consultant ophthalmologist can start the process of registration, and no consultant ophthalmologist can start this process without the express permission of the patient.

Have his lenses been prescribed by a high street optician? If so, it may be that his optician has little experience of fitting lenses. As I tried to indicate before there are several different sorts of lens and lens materials now available. While some of these are very expensive, with NHS support the cost is limited to about 50 pounds per lens. It may be that his hospital, like mine, has an in-house contact lens clinic where the professional optometrists are all very experienced at fitting KC eyes.

All the best.

Andrew

Hi cato4eva,
On the home page of this site, you'll find a 'Keratoconus at Work' leaflet which you can download, and can be given to the employer to explain how KC can affect people. It also gives details of the Access to Work scheme which can help whether someone is registered or not. We have also just produced a new leaflet - Keratoconus, how the law can help you which will be up on the website soon. In the meantime, if you e-mail me or PM me with your postal address, I can send you a copy.
Anne

thanks for the help

hello- your mate's story sounds common enough, i just had the graft on my left eye after not being able to wear any lens in it finally for about a year, the graft was NHS and that waiting time not too bad.
I was referred by my GP to see a KC specialist, and I saw several until I was happy with the treatment and the options on offer, as I am fairly young I am optimistic about the future for my right eye which isnt as bad at the moment.
If he is not working with computers like me he is in a good position! why does he have time off work? i rarely have time off for my eyes as i can see very well in the right eye, and I can drive no problems legally. I have never considered registering as disabled- unless anyone can expand on why this is a good idea?.
sometimes getting the right eye lens in is tricky (hay fever not great) but it has to be real bad for me not to be able to work.
KC isnt fun and it can be depressing but the treatment options are good and ever increasing, even in the private sector if you don't want to wait for the NHS and have the cash- clinics like http://http://www.focusclinics.com/ in London- it might be worth a trip to see a KC specialist privately?
offer collagen cross linking for example and may also be able to offer advice on other treatments.
your friend will find lots of info here as well as on the net generally for treatment options.
good luck!!

In response to dweezil's comment about anyone expanding on why it is useful to get registered:
well, first, there is no longer any such thing as registered disabled - we now have the Disability Discrimination Act with its definition of disability, and it coveres everyone the definition applies to, whether registered in any way or not.
In practice, for those with non-eye disabilities, it means getting doctor's letter on every occasion anyone may question your health or capabilities or status...... a right bind.
For people with vision disabilities, there is still registration as either partially-sighted or blind. The registers are held by the local authority where you live, and require a huge long form from your eye consultant.
THe benefits are:
- if your sight has deteriorated to the point at which you are having difficulty doing your job, and either need special adaptive equipment (such as talking computers) or you decide to retrain for another career, it can help. In particular, in my experience, Access To Work might have paid for adaptive computer kit, but then I'd have to learn to use it - and the doors to training in use of adaptive kit suddenly closed until I had a registration number to give the doorkeepers.
- you can confirm your status to the sceptics!
- you can show a registration letter rather than go through rigmaroles of getting doctor's letters for everything - for example, if you require special adaptiveequipment, you can get it VAT-free just by putting your registration number on the order form, and not needing lengthy correspondence.
- you can get a bus pass ("Freedom pass" in London) and disabled person's railcard - this is a significant saving if you can't or don't drive and do a lot of travelling on public transport.
- if you qualify to be registered as blind, you get a blind person's tax allowance and half-price (IIRR) TV licence.
If you can legally drive without any problem, can continue with your job using all the normal equipment, have reasonable sight with lenses and reasonable wearing times, you aren't going to qualify anyway, so it doesn't really matter. That's "you" as is "one", you understand.
Rosemary

hi i would just like to say again thanks for all your help i got the infomation in the post to day it was very helpful and was suprised how fast it arrived.

i know alot of people with KC can drive but my friend has never been able to. which he finds realy annoying at times and seems to be the one thing he really regrets. but after he has read some of the peoples stories on here he seems a little more brighter and the possibility that he maybe able to drive in the future seemed to help with the stress of his work at the moment

so thanks again

cato4eva

You are welcome; any help we can offer is always gladly given.

Often the most difficult thing is for us to admit to ourselves that we are disabled. Once that Rubican has been crossed, other steps are easier to take.

The RNIB defines 'partial sightedness' as being unable to recognize the face of a friend across a street. "Legal blindness" has a more objective set of criteria attached to it.

All the best

Andrew