UK Keratoconus Self-Help and Support Association

Hello,

I've just found this today, and how glad am I that this exists!

I have had it in my right eye for 6 years so always thought "at least my left eye is still ok"

But then as luck would have it have been diagnosed with it in my left eye too. We're beyond glasses now- trying contacts not too successfully yet- onto the 8th set.

Sure you must all have felt like this- but how scared am I - have no idea what to expect. Suppose there is no way to tell, how do you all cope?

Anyway would appreciate any comments, help, suggestions.

Hi sonia, cope we must, so cope we do. Take each day as it comes......and each new pair of contacts as they arrive.

I started out with plain soft, extended wears, then smaller hard contacts, then hard ones with the soft skirt, then finally LARGE RGPs and it took twelve pairs to get the right ones, and they were wonderful, for a year. Total span of time here was about six years to that point.

Then it was time for a new set. That took two tries and I was happy. Then, my corneal shape changed again, rather suddenly, and I was off to the races, as they say. Within two months I was on my back, having a graft.

Now, about six weeks later, I'm reading and working with one eye, the un-grafted one, which is not a really effective eye....but better than the new graft at this point.

I cope by not going out in the evening, not driving, not doing any of the hobbies I did for years.......I rely on my family to care for me when I have my one lens out, I still do the cooking here, still go to work, still work on my computer with enlarged fonts, still play my pipes for weddings and funerals, etc......

We all cope by being patient (most of the time) and just waiting for things to get better. We cope by leaning on each other here. Some of us cope by believing that there is some Godly reason that we were selected to have lumpy corneas.

You'll find things to do. You'll learn to manage your life and you'll go on. Keep the glassware back from the edges of the counters. Get some large print books. Take up crochet or knitting. Play with your kids more, or borrow your nieces and nephews and play with them, they don't care if you can't see everything. Learn to joke about being a little vision impaired, believe me, that helps. Look out on the street and see someone in a wheelchair with no feet........remember how good you have it.

Remember to be like a fish........they only go forward, never backward!

Hope this rambling fits into your scheme of needs someplace, and remember, we're all rooting for you, we are on the same team!!


Cheers, Piper

Sonia - as Piper says, there's always something that can be done. There are many different lens options these days for KC and new treatments coming along. And it's important to remember that only about 1 in 10 of people with KC ever get to the stage of needing a graft - the vast majority do get pretty good correction with lenses. (You'll find a higher proportion of people with grafts on this forum, because more people with advanced KC post here, but that's not typical of the KC population). If you PM me or e-mail me (anneklepacz@aol.com) I'll send you our basic information booklet about keratoconus which will help to answer some of your questions. It can take a while to get the best fit and vision with contact lenses, but I'm sure you'll get there in the end!
Anne

Hi Sonia,

Welcome to the forum. We all cope in our own way and it would be fair to say some of us have failed to cope sometimes!

When I got KC part 2 in mid 2004, I did not cope but the people here gave me ways inwhcih I could cope. this was hints and tips on daily living as well as working. So let us know what areas you are finding hard to cope with and people here come up with all sorts of solutions, some of them on the face of it appera odd, but they do work.

Where is it you are beeing fitted with lenses?

Highstreet optoms do not always have the facilities to try a vast aray of lenses that can help us. Hospitals tend to have more lens options available if they have a contact lens clinic.

The only hobby I can not do is motor racing, but in the new year I collect a new set of lenses which are not often used for advanced KC but the matreial is allowed so I might be able to race again!

Due to the nature of KC being so varied, it is very hard to follow a set of rules/guidelines to fit us with lenses. Therefore it is a combination of the optom going by the science and the measurement of the cornea and then the rest is down to their practical experience and the determination of the patient.

You say the lenses tried todate have been unsuccessful, in what area have they been unsuccesful?

Quality of vision, lenses staying where they should, comfort, etc.

Sorry to ask so many questions, just want a better understanding so I can give a more stuctured response.

My KC is well adavanced that I am waiting for technology to catch up with my KC, but I can cope just as well without lenses as I can with thanks to a few visual aids for using the pc and reading books. I have won competitions with my car in concours delegance, I doo all the cleaning without my lenses which leaves me legally blind in my right eye and partially sighted in my left. Everything is done by touch.

Living in the country I appreciate the sounds many take for granted as I do not bother looking where the sounds came from, you get a different perspective on life.

Hope this helps some.

Gareth

Hi
Bear with me, this is my first attempt at posting anything and , like you Sonia I've just joined up yesterday! It seems I've had this condition, undiagnosed for many years, and have wondered why I've been struggling with my eyesight for so for so long. It's only after a cataract operation that didn't cure my "multiple image" ghosting vision, that I've finally has a proper diagnosis. It's such a relief (yes honestly!) to find out what it is, and to find that there is help and support available from groups like this, although I too am scared and confused about what the future holds for me and I'm not coping very well at the moment, but am determined to overcome this somehow. So you're not alone! I'm waiting to get my RGP lenses in the new year and, at the moment am dreading it as an attempt to use rigid lenses 20 odd years ago (for vanity then!) resulted in total failure! Looks like we could share experiences as we travel through this journey!
My biggest battle now is getting back to work - I've been off for nearly 5 months now and trying to convince my employer that I need help in the form of special equipment and a lot of tolerance at least to start with is going to be an uphill struggle I fear. So if anyone has any useful tips to share on that I'd be really grateful! I've seen from other comments in the discssion forums that others of you have had a similar problems even though like me, you work for the Civil service!

Pat

There is a leaflet somewhere on the Keratoconus site that you can print off and take to your employer. The employer is bound by law to offer you a work place assessment. This done, the special equipment you need to do your job ought to be supplied.

Sometimes you have to push, and sometimes you have to push a little harder.

All the best

Andrew

Sonia and Pat!

Welcome to the boards and good to see you both posting. As an optometrist, I am more than happy to answer any questions you have about your lenses or anything that you are confused about and forgot to ask your own professionals.

Its always the case that you remember all the things you wanted to ask as soon as you get home hehe!

Pat, it IS a relief to get a diagnosis as you now know its not you going crazy! Try not to be negative about the RGP's - its possible your eyes were oddly shaped all those years ago which is why the experience was not a good one. At least now the fitters know what they are dealing with!

It often does take a while for the right lenses to prescribed. Every person with KC has a different shaped eye and different levels of sensitivity, so it can take quite a few "goes" to get lenses that give you good vision AND feel comfortable.

Also, as Anne said earlier, many of the active members here are ones that have ongoing problems with their KC, there are many many more who adapt to lenses successfully and have no problems and do not tend to post. However, the people on these boards ARE the people to ask about any concerns you have - I rather think that between them all, they have experienced everything there is to experience re KC!!

And Gareth forgot to give you his usual advice, so I will do it for him....

Remember the Hitchikers Guide to the Universe...and DON'T PANIC!!

Lynn

For information that is useful to youselves and employers;

KC Group Publications

This includes emp0lyer and student leaflets and some background info on KC which your employers will find useful.

Under UK Health and Safety Executive legislation if over 40% of your work necesitates computer use, then your employer (not so sure about small business) has a duty of care to give a VDU assesment which assess the suitability of your work station.

This link might be worth reading; Disability Discrimantion Act

There is also the Disability Officer at your job centre who will (or should) know about Access to work schemes and this might show that with the correct equipment if you need it, you can still do certain aspects of your job.

Access to Work

Action for the blind have helped many people who are in your situation, you do not have to be blind to get help, just have a sight disability which we have and they too have helped many a KC person.

Action for the Blind

and this might be of interest too which is for employers;

Emplyers Support

Sometimes action for the blind and the RNIB work together when they do assesments of your work place, they like to get your supervisoer and company occupational health people involved too as well as yourself. That way they can understand what your needs are as well as those of your employer to suggest what is best.

RNIB

Employers both private and public sector have a legal obligation under the discrimination at work act to make reasonable adjustments in the work place to accomadate our disability and this can mean finding an alternative job to the one you once did. My the same token we have a legal obligation to give those adjustments a go. Unfortunatly as KC is not visible to those we work with it is hard for them to understand so we have to do much of the leg work ourselves which is where the support group comes in to try and share that burden.

If you have not already registerd your details with Anne Klepatz (details on the site home page/contacts link) and she will send you much of our information. You will also get regular news letters and access tot he members only area.

Hope this helps.

Gareth

Many thanks to all of you who have replied - this looks like really helpful stuff. I'll be ploughing through it all over the next few days! (It'll keep me occupied in the run up to Christmas!)
Pat