UK Keratoconus Self-Help and Support Association

Hello everyone new here and needing some serious advice, as i have been put on employment and support allowance due to keratoconus and blepathritis problems. The money has been stopped as its going to tribunal later this month, and is causing a lot of stress and unsure how to deal with this. can anyone give support in any way? /help, support advice? Has anyone gone through this before or similar can you give advice on how to go through this.

regards

davie

Davie

First of all, let me say 'welcome to the forum'. I am only sorry that you have found your way here in such difficult circumstances.

I am not sure that your experience will have been shared exactly by anyone else here, but I am sure that you are on the leading edge of a wave that will build in the coming months.

Going to the tribunal, be true to yourself. Do not attempt to minimize the difficulties with which you live, and neither should you exaggerate them. Please know that all of us here have you very much in our thoughts and, if anyone had gone before you into this exeperience, I am sure that they will be along in a moment with more helpful counsel.

You may find it helpful to print off and take along with you the leaflets that the group publishes on this site.

Andrew

Hi David, I've posted a reply to your other post on the Help and Advice thread.
Anne

Thanks for the support. I have recently taken some evidence from doctors records (i made an appointment at my local surgery). I was able to get copies of some of the medical stuff from it. I have still to contact the contact lens department as im not sure but i think their notes may be different. Maybe somebody can clairify this or does everything from various hospitals/surgery's go into the same records? Thanks for the feedback much appreciated would appreciate any advice given. Has anybody had intacs done before? I m being considered for it if anyone has, how successful was it and how was the vision after it settled. This is partly down to one eyes intolerance for wearing a lens after a number of years it would not tolerate it anymore and stopped giving vision.

total support from me viewtopic.php?f=1&t=7097&p=58303#p58303

more advanced than me in the " process "

Just to give an update on my tribunal situation. my appeal to my tribunal was rejected due to the fact i was attending college part time (and not problem free health wise, but was trying to keep mind of the ongoing situation with the keratoconus and blepathritis.

On a positive note i have managed to get back into work, though my in line boss does not believe (or seem to know anything about it) that this disease and blepathiritis symptoms can cause vision problems.

To be able to get back into work i had to find a compromise as one eye will not tolerate a contact lens anymore (floods of tears, lack of vision and inflammation/irritation), means i was able to get a prescription made up for glasses with prescription in one lens and contact lens in the other. Allowing me to safely drive, and work part time.

For treatment of the blepathritis i use lid wipes and lymecycline 300 once a day but still is a constant battle with the dry feeling eye caused by the keratoconus. i also use viscotears for a dry eye which works fairly well but still can be quite dry feeling.

I have and still been considered for intacs procedure but until the blepathritis is dealt with this will be on hold (though not keen on surgery either).




Any suggestions on how to improve the situation?

Hi Davie and congratulations on getting back into work and finding a compromise that works reasonably well for you.
There are a number of dry eye preparations that people on the forum use including Clinitas Soothe and Systane. Other people may have other suggestions. So it might be worth trying various ones to see which one suits you best.
On the work front, have you seen the leaflets about KC and work that you can download from the home page of this site? www.keratoconus-group.org.uk/sitev3/publications.html
They might help convince your boss that your difficulties are real.
All the best
Anne