UK Keratoconus Self-Help and Support Association

Hi Folks,

As you know I had intacs done on my right eye up at Sunderland Infirmary on the 17th March.

The intacs are perfectly placed 60% down into the cornea, there is no inflammation nor any movement.

I had my second refraction yesterday and unfortunately there isnt any significant improvement to my vision!! I really wasnt prepared for this at all - i had really thought I was on the way to getting a decent level of sight back.
Anyway after a bit of a chat with Mr Morgan he removed the stitch and advised me that I will most probably now need a graft. We will do a contact lens eye test in four weeks, just to give it more time to settle and to see if I can get any better vision with contacts. IF not then the intacts will be removed and I will need to consider a graft.

Mr Morgan was genuinely really disappointed for me as the pin hole test is quite good. He also said to me that if he had needed to take a intact patient to a conference to show his colleagues how they should be positioned then mine were perfect...how frustrating is that when he tells me they are perfectly positioned but arent improving my vision.

As I wasnt expecting this news I now have loads of questions regarding grafts bouncing around my head . How long will I wait, what is the recovery time, how long is it before I can travel, rejection etc etc.
I am still off work. My empolyer is not the supportive nor sympathetic kind so am quite worried about my job and fear that redundancy is looming. I have been to see the team at Action For the Blind. They have so far been really helpful and supportive.
Next week they will show be in detail what assisted technology there is available to help with pc work - apparently my employer cant get away without providing me with solutions to help me do my job. And have assured me they will help me get this. I am also coming round to the fact that I may not be able to work behind a pc all day and have started to look at other alternative types of employment ...ones that dont require me to work at a pc all day. I know there are not a lot of jobs that dont require some pc work but am sure I have enough transferrable skills to find other jobs that dont have so much pc work. I know for sure that it wont be the same salary but I will survive.

Once again I must thank this organisation for pointing me in the right direction of Action for the blind.

Thanks for your help and support

Bye for now

Ali

Oh dear Alison, I am sorry.

I know that when you put all your hope in a particular therapy it is a great disappointment when things do not work out as you hoped.

All the best. Let us know how you get on with your progress towards a transplant (or are you expecting both eyes to be done?)

Yours aye

Andrew

Oh, Ali, what a bummer!
HOpe you get better news when they try ac ontact lens fitting. THat is, that they'll be able to find something from the many types of contact lenses now available to improve the vision.
Good luck with the employer and with AFBP and finding adaptive equipment. DO remember to ask about training in how to get the best from the kit, not just how to get hold of the technology, won't you?
THere is a lot of kit to hep with using computers these days, and the technology is improving, so hope you get something that will do the trick for you.
Rosemary

Alison, really sorry to hear that it hasn't worked out for you as you hoped it would.

alison falshaw wrote:I am still off work. My empolyer is not the supportive nor sympathetic kind so am quite worried about my job and fear that redundancy is looming. I have been to see the team at Action For the Blind. They have so far been really helpful and supportive.
Next week they will show be in detail what assisted technology there is available to help with pc work - apparently my employer cant get away without providing me with solutions to help me do my job. And have assured me they will help me get this. I am also coming round to the fact that I may not be able to work behind a pc all day and have started to look at other alternative types of employment ...ones that dont require me to work at a pc all day. I know there are not a lot of jobs that dont require some pc work but am sure I have enough transferrable skills to find other jobs that dont have so much pc work. I know for sure that it wont be the same salary but I will survive.

What is it with employers these days??????? Too many seem to think they can get away with disability discrimination; I know how you feel having been through this twice now.

Action for the Blind are correct, your employer is legally bound to make reasonable adjustments, and the cost for this can be either fully or partially met through the Access To Work Scheme; you will almost certainly find that you are covered by the DDA.

Dear Allison...

I am sorry to hear about the outcome of trying the INTACS. I hope things will get better for you soon.

If my reassurance is any help, I just wanted to let you know that you are not alone in facing a less than supportive employer. I personally faced the same when my employer found out I had Keratoconus and tried to sack me in a "legal and politcally correct way" beofre I can apply to take time off to get something as simple as crosslinking done!! Just imagine! They couldn't eve stand the idea that an employee may need to take a month off for recovery and to add insult to injury they try to violate your rights as well! Anyhow, just look on the bright side Allison, you have access to what seems like very good quality care and from what we know today corneal graft surgeries have become so advanced compared to before and are far less complicated than they used to be. Althogh I don't knwo the specifics of your case but it sounds lke with a graft (and post graft CLs if needed even) you should be to achieve functional vision and not settle for a lesser paying job. In any case I sincerely wish you the best of luck and I am happy that you have tapped into resources of support such as this site and Action for the Blind for support! good luck!

In general we advise folk to print off the leaflets on the site to show to people; employers, colleges etc, who may be struggling to understand the experience of the person with KC. My own experience was that my employer was understanding and supportive; others seem to have a less positive experience.

The KC group has limited resources, but the RNIB (Royal National Institute for the Blind) does have a well developed campaigning arm. If employers look like they are trying to use keratoconus as an excuse to dispense with the services of an individual employee then either a trade union or the campaigning arm of the RNIB (or other national equivalent) would be a good source of help.

Andrew