Just to let you know that at the weekend the site will move... The address will be the same but its actual location will change.. If you have this site in your favourites then you might have to update it. Just a reminder that this Quick Topic page is part of the UK Keratoconus self help group website at http://www.keratoconus-group.org.uk.
Many of the questions asked have been asked / answered before.. You may find it helpful to load the "Discussion page as a file" that is on the main site & then read or search for your topic.. For those new to the site & this page in particular you can navigate the site clicking on the page numbers on the right hand side above the thick blue line. To enter a question or comment Click on the Orange POST A NEW MESSAGE that’s in the centre of the blue line. do not click on new topic.. as some have
Also can you please ensure that if you have entered your details on the "Contact list:- now 44! Members" that your address is correct.. You may soon see other developments on the site.. and some features are going As no one seems to use the live chat area that will go.. (I take it no one uses it.. If you have found it useful.. let me know soon..)
Can any one think of a better name for the Glossary?.. have people found it useful?Â… Feed back please to tonystigle@yahoo.com
Thanks Tony
Quicktopic posts: Apr 2002
Moderators: Anne Klepacz, John Smith, Sweet
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freddy
Shelley
I have had photophobia badly at times. It can be quite painful and limiting. Do you wear glasses, or contacts? I think if you wear contacts you could use sunglasses. I found that wrap arounds are brilliant. Because they are close to your face the wind is kept out of your eyes, as well as the sun so I found I could tolerate rgps well.
I have a pair of sports wrap arounds which cost a lot but have interchangeable lenses - dark, cinnamon and clear. I swear by them!
Keep healthy Freddy
I have had photophobia badly at times. It can be quite painful and limiting. Do you wear glasses, or contacts? I think if you wear contacts you could use sunglasses. I found that wrap arounds are brilliant. Because they are close to your face the wind is kept out of your eyes, as well as the sun so I found I could tolerate rgps well.
I have a pair of sports wrap arounds which cost a lot but have interchangeable lenses - dark, cinnamon and clear. I swear by them!
Keep healthy Freddy
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Vicky Griffiths
A few months ago, I posted some messages as my 11 yr old son Gareth was query KC when seen by our optician at Boots. After much nagging and phoning (during which time Boots sent us up to their laser clinic in Brum for Corneal maps to be done), we have been able to get an appointment with Mr McDonnell at Birmingham Eye Hospital on 30th April. I was told by his secretary on the phone that he would only agree to see G on the strength of referral and seeing his maps. The fact that he HAS got an appointment seems to confirm the diagnosis to me. But we will see next week. I have mentioned something to school, as G has certain problems with tidy work, however much time and effort he puts in, so I wanted them to be aware that he may not be seeing properly. What worries me is if he deteriorates to a point where he may need a graft, and that time comes before they consider him old enough. And what if that happens to be GCSE or A level time? Lots of concerns...have to wait til 30th!
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Janet Manning
Hi Shelley,
I agree with Freddy, but also make use of hats. Since my grafts, I'm very sensitive to sun, so have made a virtue out of a problem and now have a range of wierd and wonderful hats with wide brims. In softer light e.g. in winter, a sports cap is good and often I can then manage without sunglasses.
Janet
I agree with Freddy, but also make use of hats. Since my grafts, I'm very sensitive to sun, so have made a virtue out of a problem and now have a range of wierd and wonderful hats with wide brims. In softer light e.g. in winter, a sports cap is good and often I can then manage without sunglasses.
Janet
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Janet Manning
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Kate Love
I think Janet's idea of providing info for schools is excellent - I am a teacher with KC and would certainly want infor about any such problems - perhaps the group could produce an info pack/booklet for schools. I am quite happy to help with it - but not until June as we have OFSTED at the end of May!!
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Emma Reilly
Hi all, Emma again. Amanda thanks for phoning me the other day, sorry but I was in bed (Heavy night out before!!!). I think that a booklet on KC for schools would be brilliant, it would prove a lot to those who don't understand. I would be happy to write something of my experiences, perhaps others my age might do so too? Thank you so much for supporting me in this, it really is nice to know that there are people out there who know what I am going through.
Love Emma
Love Emma
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Tony Stigle
Thankyou Emma for your kind words. It is really thanks to Anne and Janet who both mentioned the idea. It's a good idea and greatly needed.
For the benefit of everyone who has been following Emma's struggle to prepare for impending exams: Anne Kelpacz our support group Secretary with advice from a Deputy Head Teacher who has KC is preparing a letter of support for Emma and advice for the teaching staff to be sent to Emma's Head Teacher.
We are here, Keep us informed and if you want to talk I would be glad to hear from you.
For the benefit of everyone who has been following Emma's struggle to prepare for impending exams: Anne Kelpacz our support group Secretary with advice from a Deputy Head Teacher who has KC is preparing a letter of support for Emma and advice for the teaching staff to be sent to Emma's Head Teacher.
We are here, Keep us informed and if you want to talk I would be glad to hear from you.
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Amanda Stigle
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Janet Manning
Hi Everyone and Amanda and Emma in particular,
So glad to hear the letter of support is going ahead. i was feeling guilty about suggesting it and then 'disappearing'. My dissertation had to be in last week and I also had to do a presentation on it at college at the weekend, so a very hectic week.
Things should get easier now, so I would like to offer to draft a booklet for schools and colleges. Having done these things in the past, I know that writing by committee is very difficult and takes ages. It seems to work best where someone starts the ball rolling and gets out a document that other interested parties can critique, add to etc. I would be happy to do this and send it to anyone who would like to help, add to it etc. I think Emma's idea of a few 'stories' from young people is excellent.
If we can produce something like this as a group, it could then be advertised on this site, so that anyone with KC at school or college could apply for a copy.
My desk top publishing skills are still in their infancy. Is there anyone willing to turn a document into an attractive little booklet. Ian in Oxfordshire - can you do this? We live so close that it would facilitate the process.
As for costs, I cannot imagine that initially there will be a huge demand, so I'd be happy to fund it unless it really takes off and then maybe we'd have to think about this. Any ideas on this one?
Please would anyone willing to read a draft/ add to it and/or a young person/ student willing to add a personal story, please post a message on this site. I am not planning a very long booklet as I don't think people will read it. The message needs to be short, sweet and to the point, with factual information about KC and ideas for support and help.
If you would like to get involved, please post your private email and we can exchange phone numbers and get in touch. I realise that teachers with or without Ofsted wil be very busy at this time of year . Please just register your interest and we'll await your feedback until you have more time. You are in the best position to tell us what will be best received in schools.
Looking forward to hearing from you.
Janet
So glad to hear the letter of support is going ahead. i was feeling guilty about suggesting it and then 'disappearing'. My dissertation had to be in last week and I also had to do a presentation on it at college at the weekend, so a very hectic week.
Things should get easier now, so I would like to offer to draft a booklet for schools and colleges. Having done these things in the past, I know that writing by committee is very difficult and takes ages. It seems to work best where someone starts the ball rolling and gets out a document that other interested parties can critique, add to etc. I would be happy to do this and send it to anyone who would like to help, add to it etc. I think Emma's idea of a few 'stories' from young people is excellent.
If we can produce something like this as a group, it could then be advertised on this site, so that anyone with KC at school or college could apply for a copy.
My desk top publishing skills are still in their infancy. Is there anyone willing to turn a document into an attractive little booklet. Ian in Oxfordshire - can you do this? We live so close that it would facilitate the process.
As for costs, I cannot imagine that initially there will be a huge demand, so I'd be happy to fund it unless it really takes off and then maybe we'd have to think about this. Any ideas on this one?
Please would anyone willing to read a draft/ add to it and/or a young person/ student willing to add a personal story, please post a message on this site. I am not planning a very long booklet as I don't think people will read it. The message needs to be short, sweet and to the point, with factual information about KC and ideas for support and help.
If you would like to get involved, please post your private email and we can exchange phone numbers and get in touch. I realise that teachers with or without Ofsted wil be very busy at this time of year . Please just register your interest and we'll await your feedback until you have more time. You are in the best position to tell us what will be best received in schools.
Looking forward to hearing from you.
Janet
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