New to KC

[nicola lewis]

Hello,all. First time posting, so thought I'd better have a practice run!
Only had an optician 'casually' mentioning KC, but since looking up on the internet, I seem to have all the classic symptoms (and had them for years!) New specs every year, vision getting worse, glare, gritty eyes etc etc! Been to a certain high street opticians for the last few years, and was not happy with the vision I got from my last set of glasses. Went to a local private opticians (which has a good reputation) they did a computer scan of eye surface,which shoes gradient of surface in colours, which even to me looked quite abnormal! Contact lenses RGP's were suggested, but no mention of any refferal to NHS eye hospital?? So, now doing my homework!!
Thanks all,
NL

[Andrew MacLean]

Hello Nicola and welcome to the forum. You r first post was so good that I have promoted it from the obscurity of the Play Pen to the brash daylight of the general discussion forum!

In your place, I think I'd go to my GP, explain that an optometrist has told you that you have keratoconus and ask for a referral to a hospital ophthalmology department. That would give you a confirmed diagnosis (or not), and would put you in touch with the range of services on which you may become dependent before an emergency arises.

In the meantime, DON'T PANIC! Keratoconus may not be curable but it is manageable.

Every good wish.

Andrew

[Anne Klepacz]

Hello Nicola,
Just to add that if you'd like our basic information booklet about keratoconus, do e-mail your postal address to anne@keratoconus-group.org.uk and I can put one in the post to you.
All the best
Anne

[nicola lewis]

Thank you for your swift replies,
It looks like I can gain a lot of help and advice from your site. I will let you know how things progress.
Many thanks NL

[Lynn White]

Hi Nicola

I would also add:

If you want to go to your GP, then the information that your optometrist has would be very useful for the GP, as they tend not to know a lot about eyes. The GP will forward on this information to the hospital, who can then make a more informed decision on how to deal with your case.

It is also fair to say that some hospitals, depending on their resources, may send you back out to the high street if your condition is not very advanced, which is possibly why your optometrist did not refer you on in the first place. Its worth a discussion with the optometrist in any case.

Finally, RGPs are not the only way to correct keratoconus, normal soft lenses can often work for a long time, depending on the individual case and the severity of the keratoconus. It is always worth going down that route first simply because such lenses are more easily available.

Lynn

[nicola lewis]

Hello again,
been trying out a few things which have really made a difference. Allergy eye drops, I have mild asthma,and use Ventolin and Seretide, didn't think that my itchy dry eyes were due to an allergy, but the eye drops have really helped. Now my eyes don't feel gritty or dry anymore,I've stopped rubbing them, and I'm sure it's improved my vision a little. I've been taking Benedryl allergy tablets as well, I seem to have more energy, and don't feel so wheezy. I guess I'll need to check with my GP if it is advisable to use these long term.
One other thing I've discovered are 'Solar Shield' sunglasses, they can be worn over specs, these have really made a difference when driving on sunny days, and are so relaxing for my eyes.
I've got an appointment for contact lenses next month, with an Optician who's recommended.
Lastly, I've had a new pair of specs with 'Roddenstock' lenses, much happier with these,only a little distortion at the edges, (I think my Rx is approx -8 in both eyes). I wish this KC had been picked up sooner, I've had symptoms of it for ages, at least the last 10 years.
Have made an appointment to have my children checked at an independant opticians, they've had regular eye tests at a high street opticians (always passed vision tests with perfect vision) but I have lost my faith in them, as they failed to diagnose me. I hope to goodness that they haven't inherited it. My parents have reasonably good vision, only needing specs for reading. So hopefully I'm the only 'Odd un' in the family!

[ginny077]

Hi Nicola,

I have had Keratoconus for the last twenty eight years. My eldest son is twenty one and my youngest seventeen. Both now wear glasses/contact lens.
I have regularly had their eyes checked and have mentioned my problem to their opticians before they go in to be checked.
Luckily at the moment they are both fine.