UK Keratoconus Self-Help and Support Association

Hi

I am new on here and just thought i would post to see if anyone has any tips or advice for me as i am not aware of any groups in my area (Plymouth) and don't know a massive amount about my condition. I was diagnoesed with KC in my early 20s in my right eye (i am now 32) and have been wearing glasses for reading, TV etc. Yesterday i was fitted with my first contact lens for my right eye, nothing in my left as at present it is unaffected. I have not gone for contact lenses before as seeing as my left eye is ok, i didn't really feel i needed them, but decided to give it a go and see if there was a massive difference. I have noticed quite a difference in my right eye vision, but not massively overall as i think my left eye must make up for it quite well.

Just wondering if anyone had any advice for a new contact lens wearer with KC and any other help will be greatly appreciated. Not really sure what i am after, but just a chance to chat with others who suffer the same thing. although, reading some posts has scared me a little as i hope that my eye/s don't get as bad as some of the people on here.

thanks in advance for any advice.

Jess

Hi Jess and welocme to the forum.

Just to adress the last point you make DON'T PANIC!!!

The forum is becoming more balanced but there is stilll a bias to those who are really strugling with their KC so we do sometimes get the more extreme cases being visible.

Most peopel with KC cope for the rest of their natural with contact lens wear.

As far as advice to a new lens wearer.

1) Build lens wear slowly.

2) Follow good hygiene when putting lenses in and taking them out.

3) Always carry a small towel! This has been a real help to me on many occasiosn, many public toilets don't have plugs for the sinks and the sink tops can look very grottty (well the gents anway ), but placing atowel over the sink means you have both a clean surface and something soft to catch the lens on without it going down the plug hole or disappearing onto a dirty floor.

4) Have a pair of stockings handy to place over the vacuum cleaner hose; saves crawling on your nees and using a torch, the lens gets sucked to the stockings and not up the cleaner.

5) Travle RGP lens solutions from Boots, I have mine in a small plastic umbrella case, fits the cleaners, some tissues, lens case and some eye drops and all fits nicely inside my jacket pocket. Very hand along with the towel if you are unfortunate to get dust behind a lens, you have everything to rectify the situation.

6) Hand wipes should you need to quickly remove a lens and hand washing facilities unavailable.

I'm sure there are other handy tips which I can't think of right now, mut my lens stuff I carry round has only been used in an emergency about twice in the last four years. The rest of the time it is handy for routine lens maintenance throughout the day if needs be but I have a habit of greasing up my lenses.

Hope this helps.

Gareth

Welcome to the forum.

Gareth is right: the most imprortant thing to remember is that you should not panic. Even if, after following Gareth's excellent advice, you still are not coping with a contact lens, then there are others that you can try.

All the best.

Andrew

Thanks for the kind words of support. Things have been and are ok with the KC. However, It's nice to have some people to talk to who have been through it.

Thanks again
Jess