Quicktopic posts: Apr 2002

[Emma Reilly]

/682Hi again and hello to Amanda & Janet,
I thought that my school's address would be needed for the letter of support to be sent so here goes,
Mr Gerry Hegarty
Mount Lourdes Grammar School
Belmore Street
Enniskillen
Co. Fermanagh
N. Ireland
If you could however send be a copy aswell I would be extreamly grateful. Finally I have finished all my coursework but I really must revise for these exams. My German Oral is on the 15th! I'm sure many of you went through the stree of exams and dealing with KC, so wish me luck! If you need info for the booklet please contact me as I'm sure I will able to send a viable submission!
Best Wishes,
Emma

[Shelley]

Freddy /m674 , and Janet /m676,

Thanx so much for your suggestions. I have now sent off an exemption form and am awaiting a response. If I get that I'm perfectly happy to pay the difference on frames/tints etc., but I didn't really want to spend a whole month's worth of benefit on lenses and starve in the process! I have also got a new computer for uni with a nice big screen (it's bigger than my telly!).

I honestly hadn't thought of hats before, but am a fan, so I am using some nice funky fisherman-style ones I have already, it's also been a good way to convince my Mum that I *need* to spend my incapacity benefit on more hats!!! hehehe

Unfortunately, I would dearly love to be able to wear contact lenses again (I did in 1999-2000), but not only did it seem to worsen my condition, I also suffer with very bad hayfever and my constant sore, watering and blinking eyes made my lenses keep popping out.

I'm awaiting a consultation with a surgeon, but I will ask him if I can try scleral lenses first. I don't fancy having another operation (I've had 5 already on various bits!), but my current optometrist is obesessed with cutting my eyes up :-o!!!

Once again, thanks for your advice, I'll let you know how it goes!

Shelley xxx
<a href="mailto:the-boss@little-miss-alien.co.uk">email</a>
<a href="http://www.little-miss-alien.co.uk">Website</a>

[Ian - Oxfordshire]

Janet,

Happy to take a raw text document and have a go at designing a booklet - I lack creative flair but I'll try.

Rgds
Ian

[Hewitt Catherine]

Out of Office AutoReply: Keratoconus

I am on leave until Monday 29 April. If you have an urgent query please contact Jane Lewis on 01733 895238

[Anne K]

Janet, I've been trying to e-mail you but get them bounced back. Could you contact me re your latest posting (682)either anneklepacz@aol.com or ring me on 020 8993 4759.

[Vicky Griffiths]

Well, our appointment with Bhm Eye Hosp has been moved to Monday, and now I'm a bit panicky. Keep hoping Mr McDonnell will say it's all been a fuss over nothing and Gareth hasn't got KC. Very unlikely given the evidence. My friends asked if I'd made a list of questions to ask, and I haven't. Fell as if my brain will go to jellly, and I'll forget a crucial thing. What questions should I ask?

[freddy]

Dear all,

Some news to share! Thanks to this list I have had lots of support and have recently met up with Carol - it is good to natter to someone who really understands KC. I have not been able to get to the conference and don't seem to know anyone with KC, or even at my eye clinic, so thanks!

Also I have seen a great letter Anne Klepacz has drafted to inform schools about KC. Thanks Anne. If EMMA REILLY reads this - what is your email address? Can I email you direct? Also is JANET MANNING there too, sorry I can't find your email address either!

I can't blame the KC for a bad memory and disorganisation, can I? Keep healthy all. Freddy

[Alice Caudle]

Hi Shelley,

I also suffer from hayfever, especially over the last few weeks :( It would be good for you to try out scleral lenses before surgery as hayfever has much less of an effect on them than the other lenses (for me anyway!) Basically when I'm feeling hayfevery my eyes just feel a little itchy, but there's no chance of the lenses falling out or anything. They are surprisingly comfortable. In fact the other day when I'd been rubbing one of my eyes (after getting a bit of shampoo in it) it felt a little swollen and sore, but actually felt better when I put the scleral in than with no lens!

Hope this is encouraging!
Alice x

[Janet Manning]

Ian,
Thanks for your offer - that would be a great help. I've got some ideas for layout, so when I've got some text together and passed it around for others to comment on/ add to/ change etc. I will get back to you.

Freddy,
Had a great chat with Anne and have seen the letter too. It strikes just the right tone. We're just trying to get some info on special needs provision for post 16s to add to it.
My email address is janetmanning@lineone.net

Everyone
I will make a start on drafting a booklet for schools and colleges asap and send it to anyone who is interested in contributing/ commenting etc. It would be good to have it ready for the next academic year in September. It would be particularly valuable if students (school and college) and teachers could comment and a few brief personal stories about good support received might encourage other institutions. These should also include what students with KC have achieved!

If you have a contribution or would like to see the draft for comment/ additions, please let me know via this page or my personal email above, with your email address, so that I can forward it.

Look forward to hearing from you all,
Janet

[Emma Reilly]

/m689 Dear Freddy,

My email address has been discontinued from school unfortunately so if you want to contact me direct you can phone me on 02866328072 (Home) 07985751376 (Mobile). As you probably know the GCSEs are starting in 2 weeks time so I'll be getting study leave and will have plenty of time to spare for this leaflet. I have spoken to my school about the leaflet and some of my teachers are willing to submit an entry. (The one's who understand of course!) My eyes have improved a bit these past couple of weeks but of course I then broke my lens! I just seem to get all the luck! Hope to hear from you soon,

Emma