UK Keratoconus Self-Help and Support Association

i posted my first topic in Jan this year,i was told that i will need a graft to my left eye because i had developed Hi -drops{excuse spelling!!)i felt pretty low at the time but with the replys i received made me feel better and not alone, anyway i have attended my local nhs eye hospital during this time and they keep saying yes you will need a graft but come back in three months, this has happened now on the last two visits, the hi-drops is still there but not as severe, is this normal practice? the head surgeon has been off sick for the last six months,do you think i am being put on hold until he is back in work?
during the last six months i have had to rely on seeing out of my right eye which by the way also has Keratoconus but not as severe as my left one and is treated by wearing a hard contact lens,my life has been on hold for the last six months, it has affected my work a great deal, i have to drive a lot in my job, and i am really struggling to see ,and it is near inpossible to drive at night, i don't know how long i can keep working like this which is tough because i have done it for over 28 years(i'm 46 now) my doctor said i maybe able to claim disability allowance is this possible?

sorry for the long winded post

Hi Russ,

To best of my knowledge while hydrops are still present doctors prefer not to carry out surgery. I think this is to prevent complecations.

There are people who claim disability living allowance. It takes time for these things to be processed but I am sure organisations sucha s RNIB will be able to help.

On the owrk front we are coverd by Disability Discrimination Act and your employers should make reasonable adjustments to your work environment. This for example amy mean stopping the driving and taking on a desk related job. They should find work for you at a similar pay level to where you are now.

The people at Job Centre Plus should be able to help and there is also the Access to work scheme which helps provide us with extra equipment that we need.

Action for the blind are good too for ideas on things to help us see at work.

All these organisations are there to help the employee and the employer in equal measure.

Google these places or search the this forum for these people and you will see how others have approached your situation.

Hi Russ
Did I send you the DVD of the 2005 conference when you joined? If not, let me know and I'll put one in the post to you. It includes a talk from Mr Dart, consultant at Moorfields, on when to offer surgery and he talked about hydrops then. He told us that in a very few cases, a graft would be offered in the early days of an acute hydrops if blood vessels had started to grow into the cornea. But in the great majority of cases, the right thing to do was to wait until the corneal swelling had gone down before doing a graft. So, frustrating as it is for you to have to wait, it is normal practice.
On the work front, do download the Keratoconus at Work leaflet from our home page. There is all sorts of help you can get through Access to Work. And it may be useful to give a copy of the leaflet to your employer.
All the best and keep that hydrops healing!
Anne

Hi Russ

Suggest you do some research re work and KC. Action for Blind People are really good and have offices dotted around the country - they have what is know as employment retention officiers who advise both the employee and the employer of what can be done and how to get around things for the best.

Action for the blind employment search results

They will help with things like benefit claiming and retraining if needed along with many other aspects of day to day living.

RNIB are also excellent in this area and offer very similar services and again from different locations across the country.

As for KC and the DDA - well different employers will have different ideas here. Yes, we should be covered I feel however as both RNIB and Action for Blind People pointed out to me (along with my solicitor) the only way this will be tested is when it goes before a tribunal - fortunately I didn't get all the way with the tribunal, magically I got what I needed just before my solicitor acted (call me cynical if you like however, I personally felt it was hard work).

Hope all goes ok, if you want to chat PM me

best wishes

Susan