UK Keratoconus Self-Help and Support Association

Hi,

I have had KC for around twenty years now, and the condition is quite advanced. I have tried numerous contact lenses (rigid and scleral), the latest being hybrids, which in my case are Synergeyes. The condition in the left eye is so advanced that with the steepest lens they offer, Moorfields advised me not to wear it for more than 3 hours at a time. The right eye fairs better - both in terms of vision and comfort - but I am finding that if I wear it every day, it soon becomes very uncomfortable and I need to take at least a day out where I wear no lenses at all. As my condition is way beyond the glasses stage, this means I am finding it increasingly difficult to hold down my job - which often means twelve hours on the road.

I have my next appointment at Moorfields in a few weeks, and have finally got to the stage where I am going to ask to go on the list for a corneal graft in my left eye, but could anyone advise me as to the likelihood of advanced KC sufferers receiving benefits, and also, the steps I would need to follow in order to try and get help.

Thanks in advance,

Simon

Simon,

My first port of call when I had lens wear time limitations was to contact my employers occupational health department and discuss access to work and working with my employer to get an assessment bt Action for the Blind so we knew what adjustments were required to help me hold down my job. If your employer doesn't have an accupatonal health department, you should be able to go through your HR department.

My understanding is that if you have a long term medical condition, your employer just can't get rid of you without trying to make reasonable adjustments which you must give a go.

Simon,
Do print off the leaflets on Keratoconus at Work and Keratoconus - How the law can help you at work, which you'll find on the home page of this site www.keratoconus-group.org.uk/sitev3/publications.html
Hopefully if you follow the steps Gareth suggests, your employer will be co-operative. No one should be losing their job as a result of KC. As well as doing workplace assessments, Action for Blind People have advisers who can help with employment issues. Several people on this forum have found them helpful.
Let us know how you get on.
Anne

Again temp registration would help

thanks for the advice guys,

the problem is that I work as a driver, so as you can imagine, it would be difficult for an employer to 'make allowances' for my KC in this regard. At the moment I am really struggling to cope, what with having to change lenses over a number of times throughout the day whilst in the van (hygene issues!), and as the vision in my left eye isn't great (though passes the reading line test), I have serious reservations about being able to continue with driving work anyway. Add to that the onset of winter, when darker mornings and evenings mean more vision problems due to 'ghosting' (not ideal on motorways), and you will hopefully understand why I am enquiring into the possibility of receiving benefits.

Simon