UK Keratoconus Self-Help and Support Association

Hi,

I am a newbie to this forum ( in fact any forum!). I was diagnosed with KC 20 years ago. Luckily, it has remained reasonably stable and at 46 I can still see reasonably well through spectacles. I tried RGP but found them too uncomfortable so gave up and went back to specs.

My nephew was diagnosed two years ago, unfortunately his sight is worse than mine and as they cannot correct his sight with specs he has been trying for the past year to get on with RGP without much success.

I am most effected by not being able to drive in the dark has anyone found anything that helps with this?

I have just recently found out about Kerasoft lenses and am going for a fitting with a company called the Eye Acadamy in Windsor tomorrow- does anyone have any good/bad feedback on this opticians please? looking at the Ultravision site there appears to be several types of Kerasoft lenses available so I guess whether I am successful may, in part, come down to the expertise of the Optometrist. If anyone, lives in the Hampshire area and has had sucess with having these fitted could they let me know who they went to please?

Is there any advise anyone can give me regarding Kerasoft lenses. Are there any questions I should be asking the Optometrist anyhting anyone wants to share re these lenses?

Do I need to be careful about what cleaners i use as a Kerataconic. my eyes are generally sensitive and I was in the way distant past allergic to a preservative in the lens solution.

I am considering cross linking but as I am know older and it is fairly stable does anyone have a view on whether this would benefit me or i would be best just to try the lenses on their own.

Any comments gratefully received.

elizabeth

Welcome to the forum! I am glad to know that your own KC is managed with glasses, but sorry to learn of your nephew's progression.

You raise some questions. As to cleaners, I do know that many people with KC have unusual reactions to chemicals in the environment. For many years I suffered discomfort when int he presence of people wearing perfume. I think it was a reaction between my tears and the volitile chemicals in the scent.

Having agreed that there is a problem, I am afraid that I do not know enough about "cleaners" to be able to offer any more help, save to say that the simpler the preparation the less likely it is to provoke a reaction. I use unscented soap, and we use cleaners in the house that are trigger rather than aerosol activated.

I think that we have each learned to come to our own accomodation with night driving. For a long time I did not drive after dark, although since surgery I am able to drive again at night and in daylight. Gareth is the expert on anti-glare glasses, but although not an expert, I can confirm that I have found these a great benefit.

All the best

Andrew

I have had the same problems as you have rgps: can't get on with the lenses or solutions. Ultimately, because of my intolerence of the lenses and the professional standards of eye sight I need in my profession, I will be having a graft soon (next week in fact ). In the interim, I have been wearing Kerasoft lenses and I have to say they are great. Here are the pros and cons as I see it:

Pros:
Much more comfortable and able to get 8 hours a day
Good vision
They stay in the eye, I have been able to swim, run & cycle in them.
Easy to put in.
Less likely to be damaged or lost

Cons:
The vision isn't as good as rgps (still some double vision and glare)
Driving at night is still out.

On the whole, the vision is plenty good enough, the double vision is inconvenient but a lot better than wearing no lenses. I think after a few tweaks it might be possible to wear them for night driving too. My eye still throws a lot of protein at the lenses and my eyes are not entirely happy but it is ten times better than rgps. If I need lens after my graft, these will be my choice, absolutely no doubt.

Hi Matthew,

Thanks for comments have found them helpful. Good luck with graft next week will be thinking of you. Let us know how you get on.

Hi Andrew,

Thanks for your response I appreciate it - feeling a lot less alone now with this KC. Wish I had contcated this forum 20 years ago as I have been suffering anxiety since being diagnosed and have had no support.

Have spoken to my nephew and I am sure he will register soon. I am considering paying for him to have the cross-linking because I assume it is not available no the NHS? Has anyone had a good experience with a particular clinic/surgeon ?

Re cleaners - I meant the cleaners you use to disinfect your lenses, sorry I didn't word it very well you can tell I am a newbie can't you!

I am very interested to hear about the anti-glare glasses because if I can get on with Kerasoft 3 lenses then maybe I can wear anti-glare glasses at night for driving. How do I contact Gareth please?
Liz

Hi Liz and welcome!
Glad you've found us, if belatedly. The forum didn't exist 20yrs ago (no internet then) but the KC Group has been going for over 15 years with members all over the UK who get regular newsletters from us plus booklets/DVDs of the conferences we hold every 2 years. So if you'd like some of our literature, do PM me or e-mail me with your postal address (anne@keratoconus-group.org.uk)
Good luck with the Kerasofts - if you're going to be trialling the latest version, I'm sure we'll all be interested in how you get on.
I don't know where Gareth has disappeared to (he's usually here every day!) but he posts as GarethB so you should be able to find him and then send him a PM re night driving.
All the best
Anne

Liz, I'm blushing! I used to use Bosche and Lomb elite to clean and Total to soak and wet the lenses.

When I wore a scleral I used Total for cleaning and saline to wet the lens when inserting it.

Oops. What a mistake! You'll just have to forgive me: I'm a man!

Yours aye

Andrew

Sorry, no longer a frequent poster.

My employers are resturcturing a few things which means everything has gone manic, plus I have been prepraing for job interviews to devolp my career further (still with the same employers though).

It has been hectic with my cars too and trialing new lenses but hopefully through December I will be as regular as ever on the forum front.

So any questions on night driving and ways to help reduce glare pm me if I am not on the forum.