Quicktopic posts: Dec 2002

[Anne-Marie Penny]

Dear Payne Family

I was diagnosed with KC 14 years ago and wore contact lenses happily until 4 years ago when my KC eye became painful. I now wear glasses whilst my optician is trying to resolve the problem, but I find driving at night very problematic. The glare and distortion from oncoming lights is quite difficult.

However, I have a friend with KC who has never worn contact lenses (out of choice) and he has adjusted to the night driving problem.

Four years on I'm not as housebound at night as I used to be. There is progress- and hope!

A-M

[umbilica@umbilical.demon.]

Kim is having problems getting a GP lens out:

Oh dear. Commiserations. I had that problem when I first had
mine.

Is yours a scleral or a corneal lens?

The only things I've found really work are a) be patient and b)
keep calm, don't panic, it will come out eventually, it *will*
come out, it *WILL*.....

The only other thing I know of is a rubber sucker - if you can
imagine a sink plunger about 2 cm long. If that thought isn't
even more frightening than the current problems, of course!
I've got one that I was given by Ken at Moorfields - he'd just
put a GP in my eye for the first time to try it and wanted to
take it out, so I said "It's OK, I'll do it" and I couldn't. So Ken holds up this Thing and says "Do you want one of these?"
And I collapsed on the spot in a fit of hysterics!

Rosemary
--
Rosemary F. Johnson

[Payne Family]

Anne Marie

Thanks for your email. I am getting used to driving at night but I may have a corneal map done next time my daughter has hers just in case.

My daughter was diagnosed with KC 7 years ago when she was 4 and we are having so many problems with lenses. She can see to function with glasses but has problems reading etc which is not good for school. She has tried lots of lenses to date and is to be fitted with K Rose lenses next Friday. < replied-to message removed by QT >

[harpomatrix@yahoo.co.uk]

Hello everyone

I've got a major question that I need an answer quite fast. To be honest I've been a bit bad with this. I had a driving lesson on Monday 25th November in the morning. It was the evening when I lost vision in my right eye, as a result of acute hydrops. I've had 2 appointments since it happened.

Problem is I had a driving lesson booked on the 25th of November for two weeks later. I've known I've got a lesson for the 9th December (tomorrow)

I have had two appointments since the 25th of November but was too scared to ask if I would have to give up on my driving lessons. I wasn't even thinking about it until my dad brought it up an hour ago. I haven't seen my instructor since the day it happened.

I'm worried about if I have to give them up which i'm going to find really difficult to deal with. Does anyone know the rules relating to driving and having vison in one eye.

I will tell my instrutor before our lesson begins. I'm hoping he doesn't say I cannot take any more lessons.

Before my acute hydrops I did not have good vision in my right eye. The only time an object cam into focus was when they discussed having a contact lens in it and tried it. So all my lessons so far I have relied on my right eye with the contact lens in it which i was allowed to do. My way of thinking was "well before I had acute hydrops I couldn't see out of my right eye anyway si acute hydrops cannot make much difference?" or can it.

Everything seems really messed up right now

[Ian]

Hi,

'Noticed that the US based kcenter are looking to start up in Europe - can we as a group offer our support as the more focus KC gets the better and a global effort has to be the best?

They seem to have tried to contact us but not received a response - any ideas why? The contact is shown on their webpage - I was asked not to put links on here so if you need the address let me know or type kcenter into the Google search engine.

Cheers
Ian

[Ian]

Driving at night.

Big problem for most of us but the not too distant future may hold the solution... "nightvision head up displays" for our cars - apparently Vauxhall (GM) and others are developing it and it is not expected to be too far off.

It will allow you to see heat sources (i.e. people, animals) way past the normal headlight illuminated area.

Better all start saving...sounds a good way forward.

Failing this then sometimes the problems experienced are due to the pupil dilating and exceeding the lens optic zone - have a word with your optometrist... other problems are believed to be due to scaring. Try a test with a bright light source such as your TV standby LED and turn the lights on and off.

Regards
Ian

[KIM]

To John and Rosemary,
Thankyou very much, the information you both gave was very helpful, you are right Rosemary when you say to be patient and keep calm, I am however the most impatient person ever and get so worked up over my lenses sometimes they bring me to tears,sounds soppy I know! I will try harder though and realise patience is needed. John your tip of looking at the tip of my nose did work very well and the lens did pop out on the second attempt-this if I may point out is a world record on my part! I know this sounds silly but I never thought of where I was looking as I took the lens out,prehaps this is where I was going wrong? As for the rubber sucker it is certainaly one option and I will discuss this with my optician at my next appointment, thankyou both again, Kim :-)

[Janet Manning]

Dear Harpinder,
Sorry thingsare still so difficult and that you've got another problem to face re the driving lessons. After my grafts I was unable to drive most of the time for more than 2 years. It was extremely frustrating and very tempting to just get in the car, with it sitting on the drive unused. It was my GP who finally convinced me this was not a good idea. If you drive when you know your vision is not up to it, insurance will not cover you. Taking the worst case scenario of injuring or even killing someone, that leaves a mighty big claim to meet.

I decided I couldn't risk injuring an innocent person, just because I wanted to drive. You need 6/12 vision, using both eyes together for driving and need to be able to read a number plate at 25 metres (I think this is the distance. It would have it in your Highway Code book) You can try the latter out for yourself.

Since time is short I suggest you tell your instructor and he/she can test you before you start the lesson. It may mean delaying learning to drive, which will be very disappointing, but better than injuring someone. Although the instructor's insurance is covering you, I'm sure it would be regarded as a criminal offence should you not declare the current change in your vision, albeit temporary .

I eventually had a DVLA test to satisfy myself that I was O.K. to drive and this covers me for my insurance.

Let us know how you get on. I know it's hard, but try not to let it get you down. You'll drive one day!
Good Luck
Janet

[John Smith]

Hello Harpo,

Janet's answer is pretty good, and she gives the correct facts.

Try to remember though that people with one eye can still drive, as long as they can get to the 6/12 line (I think that this is the 6th line on the optician's chart).

Certainly mention it to your instructor, but if you can read the
registration at the right distance with both eyes open, then you should be able to drive OK.

Best of luck,

John

[Amanda Stigle]

I e-mailed Harpo (Harpinder)directly. But just wanted to add that I have also been through this sinario many times. It is actually amazing that the final decision is up to the individual person. Even if your eye test results are below that required for driving your optician or optometrist can only advise you not to drive! BUT as Janet says it is not worth taking any risks, if your sight is under the requirement for driving then you run the risk of injuring someone and loosing your driving license if you have any accident . The car sitting on the drive is very frustrating, especially when public transport can be so unreliable! But again it is worth it for peace of mind.