all this confusion

General forum for the UK Keratoconus and self-help group members.

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

User avatar
madmish
Contributor
Contributor
Posts: 32
Joined: Thu 31 Mar 2005 8:14 pm
Location: wigan

all this confusion

Postby madmish » Thu 31 Mar 2005 8:21 pm

:? hi, i was diagnosed with KC two days ago. i have to go back to the hospital in 2 weeks for my rigid gas permidable lenses(is that right) :oops: i am nervous scared and confused. they hurt when i tried them. do they hurt all the time?
just a bit about myself.. i am 28, female, married mum of 3 . currently studying british sign language. and i love music by the beautiful south. :D
liverpool fc champions of europe!!!!

User avatar
Paul Morgan
Chatterbox
Chatterbox
Posts: 291
Joined: Sat 06 Nov 2004 3:11 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Yeovil, Somerset

Postby Paul Morgan » Thu 31 Mar 2005 8:36 pm

Hiya MM.

The Beautiful South eh, more uf a U2 man myself. got tickets for the Millenium Stadium in the summer and everything!!

Anyway back to KC, yes welcome to the club, it is kinda scary when you first get diagnosed. the optician who diagnosed me thought he'd hit the jackpot I think...never seen a KC patient before or so he said!

Yes lenses can hurt like hell to start with. For most of us I'd say it's a matter of persevering and building up tolerance, but don't adopt an accepting attitude, keep making sure they are giving you the very best and what suits you best.

I wasn't at all happy with standard RGP's and they got me these new Comfort 02 RGP's which are excellent (see my thread below).

There are lots of options so don't just accept the first thing that comes along.

I'd also advise doing some reading so you know what it is you have. The net is an excellent source of info. The more you know and understand, the better you'll cope in my view.

As for lenses..they do get better trust me. But it is kinda down to you to do a bit of work to get used to them. It's a bit like wearing a watch after a while. you know it's on and you can feel it, but it's not necessarily uncomfortable...does that help at all?

Oh and last keep sharing your experiences on here. It really helps, I thought I was the only KC sufferer in the world, quickly learned there are many worse off than me.

Oh and yes, I have kids and a wife so that pressure can also be tough at times...make sure he learns plenty about KC too so he can help and support.

Best of luck..and sorry about your taste in music. :lol:

User avatar
madmish
Contributor
Contributor
Posts: 32
Joined: Thu 31 Mar 2005 8:14 pm
Location: wigan

Postby madmish » Thu 31 Mar 2005 8:54 pm

paul, are you sure you don't have a hearing problem too? u2 :twisted: :?: the beautiful south are great!!!
back to the KC. my consultant said he'd never seen it too and called all the students in, i felt like a freak show!!! i thought to myself..ah well i guess there's people worse off than me, when i got home..but i am now feeling a bit scared. i mean..will i go blind? do i tick "yes" on application forms under the..."do you have a disability other than visual impairment that cannot be corrected with glasses"section?i guess i still have a lot to learn..but not as much as you in musical genius!! :D :lol: :lol:
liverpool fc champions of europe!!!!

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Fri 01 Apr 2005 7:52 am

Welcome Madmish,

There is a wide variety of lenses available and I think most specialists start with what they feel is best.

This site does list all the different type of lenses which is far better situation than 20 years ago when I was first diagnosed when only one type of RGP lens was freely available and those did hurt. Now the good news, I think the most common type of RGP is the Rose K type. http://www.roseklens.com

These for me are very comfortable and by following exactly what the specialist has said and sharing problems here I have developed what is a good copeing statergy for me whereby I can wear the lenses on a good day for 12 hours.

I started at 2 hours which was uncomfortable, but remember it is not natural to put things in your eyes. On the first day, after about 1 - 1 1/2 hours the lenses got more comfrtable, but I still took them out after 2 hours and built up an hour a day to a maximum of 8 hours. Then with discussions on this site I started to wear the lenses for 9 hours for a week or so. The longere wear time is in my opinion done over a longer period. What I would say though is that if you feel you are not aclimatising well to the lenses tell the doctor, they will probably see you within 4 weeks of you getting your lenses anyway to make sure you are happy. Mine would not let me have mine until I could show I could manage them properly. Being stubborn and desperate to see again I made sure I could get it right first time so I could leave with the lenses.

Unfortunatly with KC, no two cases are alike which is why it important to share experiences so as a group we can help each other and help the doctors.

As far as declaring KC on medical forms is a grey area as osme organisations recognise the condition as a disability and other not. My car insurance consider my lenses to be just like people who chose not to wear glasses due to vanity and my policy has not changed. As far as work goes I have always declared the condition and only six months ago did it become an issue, but now new copeing stategies are in place, lenses or not means I can do 75% of my work. It is only the laboratory work I will not do without lenses in.

From my experience, RGP lenses of one form or another are the perfect solution. When you look at the medical statisitics (some I think are in the first confrence notes which might still be available if you join the group, see the homepage for details) but the proportion of KC people needing surgery is very low indeed and is not necessary to have quite so early on due to the new types of lenses available.

Good luck and keep us all posted on your progress.

Regards

Gareth

P.S Took my now wife to see Beatiful South in confence at Wembly Arena and were very diasappointed in the whole performance. :( Sorry.

Still a staunch Alice Cooper fan :oops:

User avatar
madmish
Contributor
Contributor
Posts: 32
Joined: Thu 31 Mar 2005 8:14 pm
Location: wigan

Postby madmish » Fri 01 Apr 2005 11:45 am

thanks gareth for the info. i was hoping to take driving lessons soon,and i was wondering how the KC would affect this. my left eye is worse than my right. i suffer from dry eye in my right eye, and suffer, from sometimes unbearable pain in the eye. this was only discovered this week too. beacause of the corneas odd shape , apparently my eye struggles to produce natural moisture therefore creating the pain :( god, i sound like dot cotton.!!
as for the cocert you saw it can't have been TBS, sorry!!! :wink:
liverpool fc champions of europe!!!!

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Fri 01 Apr 2005 12:29 pm

Dry eyes seems to be common to KC sufferers and I know many who use artificial tears of one sort or another, I use the AMO Blink Contacts in packs of 20 ampules. I also make sure at work I get fresh air when I can so at lunch I go for a 10 - 15 minute walk to get some decent airflow which can be very soothing and I will go the outdoor roote to get to some of the offices which are just as easy to get to by going indoors.

When I was diagnosed with KC I had just strated motor racing (1988) and when it played up again last year, I had just returned from racing in Germany. As a KC sufferer you will probably have more frequent eye tests than most motorists and you will soon develop ways of self testing to make sure your sight is to the legal requierment. Most DVLA theory test centres have facilities to ensure you can read a numberplate correctly and you may also get a certificate to this affect. Your optician will also let you know if your sight is satisfactory to drive.

I hae never declared KC on my driving licence and when I have periods where I am not safe to drive, I go under a self imposed ban. Common sense really, you would not drive if you felt you were a danger to others.

Good luck with driving lessons, I tell my passengers who get worried when they find I have sight problems 'Pot holes are there so I know where the edge of the road is! :shock: '

Gareth

User avatar
Lynn White
Optometrist
Optometrist
Posts: 1398
Joined: Sat 12 Mar 2005 8:00 pm
Location: Leighton Buzzard

Postby Lynn White » Wed 06 Apr 2005 7:24 am

Hi there...

I am an optometrist who HAS seen a lot of KC hehe....

As explained above, RGP's can be uncomfortable to start with but you do adapt to them. However, if you have only just been diagnosed, you may well get on extremely well with soft lenses. Who is fitting your contact lenses??

Meanwhile, KC is a very variable condition and no-one can predict what happens. It is very commmon for it to be worse in one eye rather than the other -sometimes people only have it in one eye! Most commonly iot is active for about ten years then stops. Just becasue you have just been diagnosed does not mean you haven't had it for a while!

As for dry eyes...read some of the posts here for general advice - the drop Systane by Alcon is VERY good for dry eyes!!

Lynn

User avatar
paula hardman
Contributor
Contributor
Posts: 44
Joined: Fri 07 May 2004 7:21 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Postby paula hardman » Wed 06 Apr 2005 3:30 pm

speaking of driving, how do people answer the question about needing spectacles on the driving licence application. I answered yes, which strictly speaking isn't true because I need contacts to drive legally...

p.s. I've just started using systane and it's very nice, also very economical because very little is needed and the bottle lasts for 6 months. With the help of this and my new blue sunglasses and I'm getting another couple of hours wear a day.

User avatar
GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Wed 06 Apr 2005 3:46 pm

It is good to hear someone else having to use blue sunglasses. I have just found out that my new monitor at work alows me to change the red green blue ratio which has dramatically reduced the level of eye strain and hence dry eyes so being able to wear the lenses for longer. The creen now has a subtle blue tint.

As they days get brighter, I think the window next to my desk will be getting a blue tint. Hopefully work will pay for it as they make the blue window tint film!

I will be paying more attention to monitors now when I upgrade my pc in the coming month.

Gareth

User avatar
paula hardman
Contributor
Contributor
Posts: 44
Joined: Fri 07 May 2004 7:21 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Postby paula hardman » Thu 07 Apr 2005 12:27 pm

Never thought of adjusting the colour ratio - mine does that as well. It's the flourescent lights that I find worse at work, but the blue glasses really make a big difference there - they make the lighting seem almost natural


Return to “General Discussion Forum”

Who is online

Users browsing this forum: Google [Bot] and 61 guests