Quicktopic posts: Jun 2003

[Janet Manning]

Dear Vicky,
I know it can be hard to keep your spirits up, when things are going badly, and it's especially hard as a parent watching a child cope with a difficulty. However it really is VERY important for your son for you to remain optimistic and positive. That way he will learn to cope with his difficulties in as positive a way as possible. In this way he will achieve his ambitions and potential. KC is not the worst thing in the world. Look at David Blunkett and what he has achieved and he's far worse off than any of us.

Sorry to sound like Pollyanna, but I really believe that a positive attitude is of the utmost importance. Of course we all need help and support and especially good sympathetic optometrists, but most of us on this page have jobs or study and lead happy fulfilling lives. Your son can too and what he needs most is a Mum who encourages him and makes him feel he can do whatever he sets his mind to.

I have experience of supporting my son through a very difficult 3 years in his teens, when he was literally crippled with eczema. There were times when I despaired, but I kept positive with him and did my crying elsewhere. He is now a highly successful infant teacher who makes his children feel that the sky is the limit. If anyone says 'I can't' in his class, they all chorus 'I can't doesn't exist in this class!' He is also particularly sensitive towards children with special needs.

In order to support your son, you also deserve support for yourself. This page can assist with that, but if you would like some more personal contact you are welcome to email me on :-
janetmanning@lineone.net and we can exchange phone nos.
I look forward to hearing from you.
Love Janet

[Vicky]

Thank you for the kind messages. Perhaps I should have mentioned that Gareth also has ADHD, multiple allergies, and asthma. The KC diagnosis came as the last straw I think.

[umbilica@umbilical.demon.]

Hallo Jane,

Sorry to hear you've got the hydrops.

I hope yours clears up well for you. We seem to have had
several people on this list recently with hydropses, and they've had varying experiences.

I've had four, altogether, ranging from 4 years ago to 24 years
ago. I haven't had to have a corneal graft, though I was warned when I had the first it might become necessary. I guess I was
lucky! - mine healed up comparatively well; they just came at
really awkward times (like just before I did my finals at
college).

There's a section on hydrops on the KC group website - did you
find that?

Rosemary
--
Rosemary F. Johnson

[Ross]

Hi everyone

Name's Ross, I'm 32 and was told I have KT 3 weeks ago. Never been to an option before then. Its only in my left eye at the mo. Big worry for me is I work in TV and my job is all about looking at things!. Work don't really seem to know what do to with me. My company doctor has asked for them to move me to an area were I spend less time looking at screens, my boss basically said 'if you're sick, then you're sick' and suggested I get signed off till it's sorted(!).

I'm on the waiting list to see my local hospital (in Bedford), but most people seem to end up at Moorefields.. my local Sight Concern charity say that when I get there they will say "oh you have KT - better go to Moorefields" and I'll have another 8 week wait! So any advice, I can book a Private consulation there for £130. With Mr Vincenzo Maurino. Anyone know him? I guess this means that I don't have to wait for all that time for my first visit?

Sorry to ramble.. chat soon

R

[David Hollingsworth]

Hi Vicky,

These things seem to come together. I have KC, allergic rhinitis (I'm definitely allergic to dust and pollen - probably other things too), and asthma. I'm convinced that they are all linked. Has anybody else had any experience of this? I still lead a normal life, manage a difficult job, and travel extensively. It just means that as well as all the eye stuff, I have to cart around nasal steroids and Ventolin as well!
Hi Laura and Aimee,

I can take time and discipline to get used to RGP's. It's taken me about 8 months (with a few lapses of the discipline bit!) to get used to them. The problem I found is that my eyes dried out all the time, and the lenses went all foggy and blurred. On thing I found was that I could wear them for ages if I was outside in the fresh air, but as soon as a went back in the office, my eyes went dry and itchy. I had a major breakthrough yesterday - I turned the air conditioning off in office - wore them all day without my eyes drying out!.
Dave.

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[Tony Stigle]

<b>Vicky Griffiths
The way to un subscribe is to click on "subscribe" at the top left of the page & then follow the options to un subscribe ..any problems send me a mail on the address found on the contacts page.

All
Just a reminder. QuickTopic is a service available to all web site designers. It is a service that the group is using and it is made available from the UK Keratoconus Self Help and Support Groups web site. http://www.keratoconus-group.org.uk If you do subscribe and are sent E-mail by Quicktopic of recent entries then it is possible to reply to that Email. The affect of this is that you will often see links to other services.. as in David Hollingsworths entry /m1750 below. Often large parts of the original message is also copied over and this can make the page hard to read. We therefore respectfully request that if possible you enter the KC web site to view & reply to messages. I do understand that if you are not PC based & subscribe by E-telephones etc then this would not be possible. Consider that some people using the site are struggling with poor vision to read the messages.
I do very occasionally remove entries. This may be because I have been asked to do so by the person who placed it. or because it has been placed there by a "subscriber" who has sent a message to "all" in their address book or who has had an auto reply sent to all e-mails they get.. The space will be marked by the note "removed by topic administrator"
In general I think the page is a "must read" to all who are affected by KC & I thank you all for your contributions to the page & for the Thank yous I get for putting the KC web together ... Its a pleasure. Thanks
Tony Stigle

</b>.

[moran]

hi everyone
i have KC and i saw this discussion room just today
can someone who has KC talk to me about what i have in my eyes?

[moran]

my name is moran im 19 and i have KC
ILL BE HAAPY IF SOMEONE CAN TELL ME MORE ABOUT KC

[Andrew MacLean]

Hi Moran.

The first thing to know is that there are lots of us with KC, and for the most part we live normal enough lives with reasonably good eyesight (sometimes very good) with the help of contact lenses.

Have you been to a hospital specialist (opthalmologist), yet?

I think that some KC sufferers get their contact lenses from the private sector. for my part, I see a contact lens specialist in the local BHS hospital, and I get my lenses at a greatly reduced price (I think I pay about &#A3;45 for them each, as opposed to very much higher prices in the private sector).

I hope all goes well with you. and welcome to this happy band.

Andrew

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>From: QT - moran <qtopic+6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com>
>To: QT topic subscribers <qtopic+subs@quicktopic.com>
>Subject: Keratoconus
>Date: Thu, Jun 5, 2003, 10:45 pm
>

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[Dinkie]

To David
I know what you mean about them drying out. If i wear them in at work to im surrounded by cookers and hot oil and it feels like ive should have stuck sand i my eyes! But then again i seem to always get the worse side of it as well with running eyes all day. Like most i suffer from life! Asthma, eszema hayfever allergies to pollen cats etc, life would be so much easier living in a bubble. Like you do david i think that all my problems are inter linked too. Wednesday i went to see my boyfriend go karting my left eye jst wouldnt stop leaking, i didnt want to to take tem out because the toilets had no mirror no wash basin and i didnt have my glasses to put on, clever me, but in the end i did. I do find that staying over friends for the night or whatever a hassle as like you i take the whole chemist it seems but thats my life and if i have to c then i need the lenses. Oh by the way Im writing tis with no glasses or lenses in so if spellong is wrong SORRY! Good job i can semi touch type.
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