UK Keratoconus Self-Help and Support Association

Hello, it's great to find a community of KC sufferers.
I don't suffer, but my husband does. I'm concerned for him, particularly as he's not felt able to wear the lenses prescribed by the hospital (Southend, Essex).

I'd be grateful for any support you can give me - as he hates to talk about it all - on ways of making life easier, or on ways to make the lenses more bearable for him. I know that he needs to go back to the hospital to get the correct advice.

I'd love to hear from anyone who can help.

Best regards

Angela

Welcome to the forum Angela,

I am now going to sound like a doctor, but can you give us some more information?

1) Unable to wear lenses may be because they are new or the condition of the ye has changed. There are also issues of dryness and the period of time the lenses have been worn. If the lens fit is fine and hubbie has had lenses for a while it may be that the wear time needs reducing to aallow the cornea to recover. Personally I use Systane which about triples the wear time in my left eye but only doubles it in my right. However the discomfort I feel in my right eye is due to a change in the corneal surface over the past three months that appears to have stabalised.

2) Help is available in many ways;

a) Contact Anne whose details are on the home page I think as she has an Employer leaflet and much more stuff available from the group explaining the condition and what help is available.

b) RNIB are very helpful for recomending equipment to make work and home life easier for when we can not wear our lenses.

c) The disabilities officer at your local job centre will be able to provide loads of information regarding access to work.

d) As you have done here, start sharing experiences helps too. For me to work normally, I need a 19 inch flat screen monitor where by the colours can be customised. This helps with the light sensitivity associated with my KC and for the times I can not wear lenses a large monitor really helps working normally. It also reduces the eyetrain I used to get too. It is that time of year where I start to wear contact lenses instead of my ultra dark glasses. I could go on all day, but with the help of this group I can live normally with or without contact lenses. The only thing I have had to give up is motor racing and I only go into the laboratory at work when I can see out of both eyes.

Feel free to give us much information as you feel fit. We like good and bad hear and the views you get will be based on personal experience.

Regards

Gareth

Gareth,

I'm sorry I don't have much information. This may sound odd, but my husband is phobic about eyes. I didn't know the extent of this until I had corrective laser surgery 2 years ago. He flipped.

As a result, he can't talk to me either about what it feels like, the appointments he's had or anything. And I know that if I raise the topic, it'll end in tears.

I was fairly certain that there'd be access to work type things on offer - I cover health & safety at my workplace, and regularly use them for people (not keratoconus sufferers, though.)

He's unable to wear the lenses because they are uncomfortable - on his first trial with the consultant he blinked them out (and that's the total of the information he's passed on).

Can you tell me a bit about this Systane stuff please? Is it a gel or drops to numb the sensations in the eye?

Sorry I can't be more precise - as you'll notice, I'm worried about him, but can't make him stick with a painful treatment option.
Thanks so far

Angela

I fully understand the phobia about eyes, I have a phobia of things in my eye which I have to confront everytime I put a lens in!!!! Afterall, it is not natural to put a 6 - 8mm disc of plastic in your eye. If it were we could poke ourselves in the eye until the cows come home with no ill effects.

Syatane is made by a company called Alcon

http://www.systane.com/consumer/default.asp

Hopefully this link will take you there. It is primarily for dry eyes, but it puts a lubricating layer over the cornea and eye lids to reduce friction between the surfaces, so aiding comfort. There are other types of solution, but this is best for me.

Blinking a lens out is unfortunatly part and parcel of the condition and in many cases can be overcome by changing the lens size or shape. It is difficult to get the exact shape necessary to sit comfortably on our eyes and give good correction.

Failing this, there is another option which is the Scleral lens, made from the same material as an RGP lens but covers the white of the eye too. A smaller version is the mini scleral and I know many who find these more comfortable than the smaller corneal lenses. Like most things, they take getting used to and in cases where the Scleral alone does not give god vision, glasses on top often solve the situation.

Phobias can be overcome, for me it was councelling, but there are other options such as hypnotherapy which I can quote many cases where collegues have found this helful in quiting smoking and a fear of flying.

I am sure your other half would like to overcome this to have as close to a normal life as possible. My suggestions may seem daft, but sometimes we must take a leap of faith and have ago.

The midlands group have asked me to be a guest speaker and my intention is to concentrate on managing the condition rather than medical issues of the eye which consultents do everytime we see them. If the subject does crop up, I will share my experiences.

Hope this helps a little, but as we say at work "Chinese water torture", keep on slowly but gently like a dripping tap and eventually you will make progress. Our partners are as important to us when managing KC as the lenses, support group and health care professionals.

Regards

Gareth

Angela O-J wrote:Gareth,


He's unable to wear the lenses because they are uncomfortable - on his first trial with the consultant he blinked them out (and that's the total of the information he's passed on).

Can you tell me a bit about this Systane stuff please? Is it a gel or drops to numb the sensations in the eye?

Angela

How far has he gone Angela with lenses, was it that one time or has he persisted at all?

i ask because when I first tried a lens it took me something like 20 minutes to be able to open my eyes at all. Tears streaming everywhere, absolute agony, it was a bloody nightmare. Now though, getting on for a year later, with a very slow build up, using a little Systane daily and with determination I cope fine. I sometimes panic and wonder if I have lost the damn things as I can't feel them. Of course I know I haven't as my vision is quite clear...but they're that good.

Is it RGP's he's wearing. If so I know traditional ones are tough to wear. I have a brand called Comfort 02 which are a sort of hybrid with a softer lens...can't recommend them highly enough. If poss get him to speak to the Opto about them or ones like them.

As has been said Systane lubricates not numbs the eye. Sadly that is not really an option.