Quicktopic posts: Oct 2003

[Gillian]

Hi Sue B I was interested in your one eye bad eye days and the way you juggle your vision. My eyes seem to be rejecting corneal lenses at the moment. I wondered if you could let me know how often you can't wear a lens (I presume you are talking about corneal)? I am also interested to know how long your eyes take to recover and if recovery means wearing a lens all day again or just for a few hours. Like you I can't drive with one eye. I am finding is very frustrating and worrying. I look forward to hearing from you.

[Elizabeth]

Thanks for the words of encouragement David N. I feel more hopeful now. Glad to hear you finally found lenses that work ok for you. Gives me lots of hope.

[Robert]

I have just discovered this site

I have had keractoconus for nearly 30 years and had a corneal graft i my right eye some 20 years ago. I have recently restarted wearing hard contact lens but am expreiencing some discomfort and can only wear them for 4-5 hours max. I met someone recently who spoke about hydrophilic (?) lens being much morte comfortable.

Could anyone advise?

Thanks

[Sue B]

Hi Gillian,
Sorry to hear that you are having problems with your corneal lenses. At the moment the problems are with my right eye more than my left. I was prescribed new lenses in July. The left has been good from day 1 but the right has always felt uncomfortable in the top right hand corner (if that makes any sense). I usually have to take it out most days. Sometimes I try to persever until early evening when I can manage with just the left lens in. Other days I have to take it out mid way through the day but then try to re-insert a couple of hours later. I can usually tell when it is a good time to try again. When I am having a 'bad eye day' the eye is extremely sensitive to the light and feels tender to touch, almost as if it is 'bruised'. On the odd days when the left one plays up as well, I alternate them for about two or three hours at a time. It seems to help.
Sometimes the lens only needs to be left out for a couple of hours, occasionally though I need to leave it out for a whole day.
I did have a very bad 3 month period back in 1993 when both eyes rejected the lenses. I had all sorts of tests at Moorfields but no cause was ever found. Eventually, both eyes returned to 'normal' of their own accord. I did find that leaving the lens out totally for a while (about a week if I remember correctly) helped the eye to settle quicker. But I do know how difficult that is when you become partially sighted without them. I had to take time off work.
I hope that your problem will clear up soon, but for now, try to give each eye a rest from the corneal lens by alternating them. If you want further info, e-mail me (SueBurbidge@AOL.com)

[Gillian]

Thank you Sue. My problems seem to be exactly the same as you - same eye too! I have tried to e-mail you but it has been returned twice. Is your computer/email ok today?

[KateF]

to adam R. Andrew B., Lois and stacey
thought i should post an update on my son Dale's behalf -#for those not following the story so far ... dale has severe learning difficulties etc and received 2 excelllent scleral lenses this summer.
yes, seemingly impossible to put in, but have to say i learned it slightly more quickly than driving, knitting, linedancing or Shakespeare !!
After a good start building his first lens up to 8 hours wear time with lots of fun and excitement seeing well for the first time in years, and no bad reactions, Dale went back to boarding school, and for 5 weeks has had no lens at all while we negotiate training problems. Carers on shift means that if someone puts a lens in theres no guarantee there'll be an experienced person on later to take it out ...
This weeekend we broke the deadlock, i spent the weekend demonstrating technique to carers and nurses, and having seen how very very happy Dale is with the lenses in, there's now a bank of people willing to give it a try -
will take time for them to gain the experience and confidence, but we are making progress.
Have to tell you that Dale, a man of very few words, sat next to me eating chocs and watching tele from 2 metres (that he cant usually see unless pressed against it) *first time in 2 lenses* smiled up at me and said "Hey . Happy!" "Happy Dale !"
This weekend is the first time he's realised that all that falling about in rugby matches involves a ball!

If you're considering sclerals, or cant manage with contacts or not sure about graft etc etc
DO DEFINITELY take a look at sclerals, they're tricky at first but are easy to care for as they store dry, and have given Dale his sight back.

kateF and dale

if you have a child with KC and learning difficulty e-mail me on kdfarminer@tiscali.co.uk

[SueB]

Hi Gillian,
There doesn't seem to be any problem with my PC or e-mail account. Have you checked the spelling of my surname. Most people put an extra 'r' in it. Correct e-mail address is SueBurbidge@aol.com
If it fails again, post your e-mail address on the site and I will try to e-mail you. Alternatively, feel free to ring me (01707 264373) if you want to talk.
Regards,
Sue

[Andrew Bosanquet]

KateF (or should I say Dale) said:

> "Hey . Happy!" "Happy Dale !"

What a blessing! I expect I speak for many to say how I admire your strength and persistence enabling Dale to see clearly. What an
encouragement to you; also to us all as we struggle with KC.
Andrew

[Janet Manning]

Congratulations Kate and Dale and now all Dale's carers too. There's a job out there for you Kate teaching people how to insert sclerals.

For Andrew B.
Re referral to Oxford, please email me for tips:-
janetmanning@lineone.net

[Gillian]

To KateF and Dale
What a fantastic achievement for you both - congratulations. You are an inspiration to us all. All the very best.