Amanda and John thanks for your concern and kind words. I was at the Altnagelvin hospital in Derry yesterday and have been told that I also have Hydrops. At the moment I can't see very well. Unfortunatly I am unable to do any work now at school until this clears up. However with my GCSEs next , month i can't really miss too much work. On Tuesday I was called up to the vice-head and she told me that there is not much point in me coming back next year to do my A Levels if I can't see - supposedly I'd be wasting my time and theirs! I'm in a Grammar school and as nodody else has any 'disability' they just don't understand. I'm quite fed up with this behaviour noe, because if I am able to keep up with the work and maintain good grades, surley it's their duty to help me?
Emma
Quicktopic posts: Apr 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Dave Hamblett
As far as Uni. goes i wouldn't worry to much, im there now and lecturers are very understanding if you let them know you cant see, i know its very obvious but i always sit in the front two rows, and most of my course info is on hand outs so that helps!!
you may find they can be more flexible as well, you just have to let tem know.
as for the school i agree with the other comments above
Dave H
you may find they can be more flexible as well, you just have to let tem know.
as for the school i agree with the other comments above
Dave H
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freddy
Emma
I am so sorry to hear that your school is lacking in understanding and tact when you describe your disability and the impact on your studies. I a Deputy Headteacher in a large secondary school and I am shocked at the reaction of some of my colleagues. I have KC and struggled enormously prior to my corneal graft - text too small to read, lots of reading, computers, driving etc. It is awful in a large school if people don't know to make an allowance for your needs. I went from healthy to disabled, or so it felt, in about a year. I struggled but I eventually had to accept people would not understand and make the necessary allowances for me unless I told them what was wrong.
You are entitled to some extra time for your exams so talk to the person who supported you about this. Maybe a form teacher, head of year, or head of special needs. Try to take them a leaflet or something to read about KC. Other people who have posted are right you do have an entitlement to be included in mainstream education and where possible the school should provide "reasonable" support. This requirement comes from the Disability Discrimination ACt but also the newly published Special Needs Code of Practice.
Can I suggest that you and a parent/carer have an interview with one of the people I suggested and take them something to read? I should go with 3/4 specific questions and be prepared to answer their questions. I know this is putting the running with you but I have found, as lots of people have, that we have to explain our "disability" to others. It is not widely known about. It is not fair that we have to do it, but maybe we can educate a few people about the disease and about prejustice.
Please contact me direct if I can help. Take care. freddy.bull@btinternet.com
I am so sorry to hear that your school is lacking in understanding and tact when you describe your disability and the impact on your studies. I a Deputy Headteacher in a large secondary school and I am shocked at the reaction of some of my colleagues. I have KC and struggled enormously prior to my corneal graft - text too small to read, lots of reading, computers, driving etc. It is awful in a large school if people don't know to make an allowance for your needs. I went from healthy to disabled, or so it felt, in about a year. I struggled but I eventually had to accept people would not understand and make the necessary allowances for me unless I told them what was wrong.
You are entitled to some extra time for your exams so talk to the person who supported you about this. Maybe a form teacher, head of year, or head of special needs. Try to take them a leaflet or something to read about KC. Other people who have posted are right you do have an entitlement to be included in mainstream education and where possible the school should provide "reasonable" support. This requirement comes from the Disability Discrimination ACt but also the newly published Special Needs Code of Practice.
Can I suggest that you and a parent/carer have an interview with one of the people I suggested and take them something to read? I should go with 3/4 specific questions and be prepared to answer their questions. I know this is putting the running with you but I have found, as lots of people have, that we have to explain our "disability" to others. It is not widely known about. It is not fair that we have to do it, but maybe we can educate a few people about the disease and about prejustice.
Please contact me direct if I can help. Take care. freddy.bull@btinternet.com
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ingrid
Hi! I'm 32 years old. Was diagnosed with KC at the age of 10. Had one transplant when I was 15 and my other eye was done at 15. (Due to severe allergic eye disease I did not get on with the lenses at all). I passed my A-level equivalent in Holland, where I lived at the time, with extra time on exams and large print exams. I missed lots of time at school, but requested to join the same school class as my younger sister. I don't think the teaching staff understood this move, but to me it really helped. I finished a year late, but at least i never had to chase any missed handouts ect. My sister just helped me out. After the transplants I had a few years of lots of eye trouble. i built up an allergie for the stiches that where used in the surgery and was in and out of hospital for corrections. I had to stop my nurses training and got myself a job in a call centre from the Dutch Health Service. Bit boring, but i still lived with my student friends and I suppose my coping mechanism was rebelling against it all. Luckily my problems eventually got less and I could start to enjoy life to the full. I passed my drving test and learned to ski.I met my husband and moved to England where I went back into nursing. However, as soon as I lived in England the Allergic problems with my eyes started to interfer with my life once again.I have been treated continuously with steroid drops for the past 5 years. I now have two lovely little boys ( 8 months and 22 months). They are a bit of a hand full - as little boys are - but great fun! My problem at the moment is that I was reluctant during my pregnancies to use lots of steroids. Basicly, I went through 3 spells of early graft rejection in the last 6 months. This totally messes up my life.I have no relatives in this country and look after my boys on my own in the day ( I work in the evenings)Admission to Moorfields seems disastrous as all I do there is worry. Rejecion is treated with hourly drops 24 hours a day and I don't think the eye thing has ever got me down as much as lately. 3 times my sight has been saved,but i worry about the future. I belief I'm a strong person and usually very optimistic about it all, but this really drives me up the wall. i would really like to hear from anyone who has been through similar things.
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Catherine (Peterborough)
Emma,
I'm shocked and disgusted to hear of the problems you're having with your school. There is no reason at all for you not to do as well as you normally would (A levels, unit, whatever). You may find it tougher and need a bit longer than someone with perfect sight but Freddy is quite right - there is legislation nowadays to make sure you are supported as much as you need to be.
I've spoken to a colleague who deals with disabilities in a different area of education. She suggests you take two or three different routes at once to get some results quickly: make sure you keep your school head in the loop so he/she has every opportunity to sort things out for you, but meanwhile your Local Education Authority (LEA) will have an Assessment Adviser who is responsible for assessing and getting in place the support you need - it's absolutely OK for you or your parents to contact them direct. At the same time it would be worth contacting the Head of Education at the LEA to make sure things get moving as quickly as possible.
The LEA will normally be your city or county council and a phone call to their switchboard should give you these contacts. If you do have problems finding them, let me know where you live and I'd be quite happy to dig out that information for you (direct email = catherine.hewitt@lsc.gov.uk). Even if your school is private it should make no difference.
You will find it useful to back yourself up with information on your prognosis from your hospital and advice from the RNIB on tools available to help you - RNIB helpline is 0845 76 99 99 - they'll also be able to tell you more about your rights.
It sounds as if your school is simply ignorant and are hoping the 'problem' will go away - this is a shame but no excuse.
Good luck and keep us posted.
I'm shocked and disgusted to hear of the problems you're having with your school. There is no reason at all for you not to do as well as you normally would (A levels, unit, whatever). You may find it tougher and need a bit longer than someone with perfect sight but Freddy is quite right - there is legislation nowadays to make sure you are supported as much as you need to be.
I've spoken to a colleague who deals with disabilities in a different area of education. She suggests you take two or three different routes at once to get some results quickly: make sure you keep your school head in the loop so he/she has every opportunity to sort things out for you, but meanwhile your Local Education Authority (LEA) will have an Assessment Adviser who is responsible for assessing and getting in place the support you need - it's absolutely OK for you or your parents to contact them direct. At the same time it would be worth contacting the Head of Education at the LEA to make sure things get moving as quickly as possible.
The LEA will normally be your city or county council and a phone call to their switchboard should give you these contacts. If you do have problems finding them, let me know where you live and I'd be quite happy to dig out that information for you (direct email = catherine.hewitt@lsc.gov.uk). Even if your school is private it should make no difference.
You will find it useful to back yourself up with information on your prognosis from your hospital and advice from the RNIB on tools available to help you - RNIB helpline is 0845 76 99 99 - they'll also be able to tell you more about your rights.
It sounds as if your school is simply ignorant and are hoping the 'problem' will go away - this is a shame but no excuse.
Good luck and keep us posted.
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Amanda Stigle
Dear Emma. Sorry to hear you have hydrops. What timing!! I had Hydrops last year so can understand what you are going through from that point of view. This means the tissues deep with in the cornea have split causing the aqueous fluid to flood the cornea. Leaving you with often no vision just a "dense fog" or "white washed wall." To others it looks to start with just like a cataract. In most cases there is no treatment that can be given. You have to wait for the fluid to disperse. After about 6 weeks, the eye will look normal, clear again (as the front epithelial layers recover). But it takes months for the deeper layers to recover. The length of time varies from the earliest I have heard of is 4 months, mine took 5 months, average is about 6 months but can be up to 1 year +.Being young and hopefully otherwise healthy is in your favour,but you just have to wait and hooefully see! There is some good news! After hydrops has resolved the eye shape is sometimes less steeply coned and more regular. Therefore vision is improved. A blessing in disguise! This happened to me. Not everyone is so lucky. But even shape and vision improves or scarring of the cornea means a corneal graft may be necessary. Either way this will be resolved. You need to make sure your school Teachers realise this is only a temporary set back. You could sit the exams next year if they were willing to accomodate you. Freddy's advice was great. It must be comforting to now there are some teachers who do understand! We do have several teachers with KC who contribute to this page. But alas none in Ireland that have come forward so far as i'm aware!
For an Optometrists explanation of hydrops go to the Glossory page, found on the main menu page.
For an Optometrists explanation of hydrops go to the Glossory page, found on the main menu page.
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Catherine (Peterborough)
Lisa (649) and Ingrid (666)
Sorry Lisa that I didn't get back to you from your message about feeling 'down' a couple of weeks ago. I'm also normally a very strong person who copes with everything on my own - somehow KC makes me feel all out of control! I hope you're both feeling a bit more 'up' now.
Personally I feel the emotional support of a group like this is just as important as the practical help and this is one reason I have put my contact details on the listing on the main site. Feel free to contact me direct for a bit of mutual crying on shoulders.
On the same topic, many thanks to Jacqueline Cheetham who propped me up when I was down a few weeks ago.
Have a good weekend everyone!
Sorry Lisa that I didn't get back to you from your message about feeling 'down' a couple of weeks ago. I'm also normally a very strong person who copes with everything on my own - somehow KC makes me feel all out of control! I hope you're both feeling a bit more 'up' now.
Personally I feel the emotional support of a group like this is just as important as the practical help and this is one reason I have put my contact details on the listing on the main site. Feel free to contact me direct for a bit of mutual crying on shoulders.
On the same topic, many thanks to Jacqueline Cheetham who propped me up when I was down a few weeks ago.
Have a good weekend everyone!
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Janet Manning
Dear Emma,
I sent a message to your personal address last week, but it has just bounced back. Like other members of this group, I am appalled at the attitude of your school. As an ex teacher and teacher trainer, I know that they are legally obliged under equality of opportunity legislation to facilitate your learning in every possible way and that the aim of the education service is to keep as many people with disabilities as possible in mainstream schools. Your present severe difficulty will hopefully resolve at least to some extent over time and all you need is a little basic understanding and support.
I had to give up my demanding job after grafts and am now studying for a new career. Things are much better for me now, but it was very hard at first, when I couldn't see so well. I thought it might help to share some of my strategies, as not all the staff at my college were helpful.
For getting help:-
1) Get the Headteacher on your side or if he/she won't help the local education authority.
2) Keep asking for what you need. It's your right. People forget and are not all unwilling.
3) It's hard to keep asking for yourself. I got friends to remind staff that I needed them to write in black pen on the whiteboard and to write big, or I couldn't see. If I couldn't see, I got up and went up close to the board and made my notes.
4) Request handouts on A3 and sight of hard copies of any overhead projector slides.
5) I wrote a memo to staff and gave out individual copies, setting out my needs in lectures and even wrote some of it in font 24 to show what I could read comfortably.
Study strategies:-
1)White stickers with large black letters on my computer keyboard, so I can see them.
2) Negotiate to word process all coursework. Work in large font and reduce for submission. If you haven't got a computer, your local education authority may be able to fund one for you, or there are charities which can help - contact the RNIB.
3) Use a high power magnifying glass for reading.
4)Use a thick Berol handwriting pen and write big for note taking and in exams, so that you can see what you've written. Don't worry about staying on the lines.
My second year exams were soon after I had the stitches out of both eyes. Had to use steroid drops for a couple of months, so no lenses. Without them I cannot see the chart, but using the strategies above and taking frequent breaks, I managed and did well.
You have obviously done well so far, despite everything. The hydrops may force you to delay your exams, but don't give up.
Please let us know how you get on and whether your school responds. Maybe you could download some info from this site to show your Headteacher.
Perhaps there is something we could do as a group to support you if all else fails - possibly a joint letter of support. What do others think? I just feel this is the worst case of discrimination in relation to KC that I have encountered.
Good luck Emma. Keep in touch.
Janet
I sent a message to your personal address last week, but it has just bounced back. Like other members of this group, I am appalled at the attitude of your school. As an ex teacher and teacher trainer, I know that they are legally obliged under equality of opportunity legislation to facilitate your learning in every possible way and that the aim of the education service is to keep as many people with disabilities as possible in mainstream schools. Your present severe difficulty will hopefully resolve at least to some extent over time and all you need is a little basic understanding and support.
I had to give up my demanding job after grafts and am now studying for a new career. Things are much better for me now, but it was very hard at first, when I couldn't see so well. I thought it might help to share some of my strategies, as not all the staff at my college were helpful.
For getting help:-
1) Get the Headteacher on your side or if he/she won't help the local education authority.
2) Keep asking for what you need. It's your right. People forget and are not all unwilling.
3) It's hard to keep asking for yourself. I got friends to remind staff that I needed them to write in black pen on the whiteboard and to write big, or I couldn't see. If I couldn't see, I got up and went up close to the board and made my notes.
4) Request handouts on A3 and sight of hard copies of any overhead projector slides.
5) I wrote a memo to staff and gave out individual copies, setting out my needs in lectures and even wrote some of it in font 24 to show what I could read comfortably.
Study strategies:-
1)White stickers with large black letters on my computer keyboard, so I can see them.
2) Negotiate to word process all coursework. Work in large font and reduce for submission. If you haven't got a computer, your local education authority may be able to fund one for you, or there are charities which can help - contact the RNIB.
3) Use a high power magnifying glass for reading.
4)Use a thick Berol handwriting pen and write big for note taking and in exams, so that you can see what you've written. Don't worry about staying on the lines.
My second year exams were soon after I had the stitches out of both eyes. Had to use steroid drops for a couple of months, so no lenses. Without them I cannot see the chart, but using the strategies above and taking frequent breaks, I managed and did well.
You have obviously done well so far, despite everything. The hydrops may force you to delay your exams, but don't give up.
Please let us know how you get on and whether your school responds. Maybe you could download some info from this site to show your Headteacher.
Perhaps there is something we could do as a group to support you if all else fails - possibly a joint letter of support. What do others think? I just feel this is the worst case of discrimination in relation to KC that I have encountered.
Good luck Emma. Keep in touch.
Janet
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Emma Reilly
/m670 Hi all,
Thank you so much for you support. I am finding it really difficult to manage at school now and all coursework has to be in by Friday!! I have been unable to receive an extension for my work as the teachers say I've had long enough. I took your advice and made an appointment with the vice head. Fortunately she was not too nice, she told me I'd just have to get on with things and try to adapt as much as I can. The school have provided for me as much as they can (So she says!!). I think that the fact I am in a Grammar school is a major factor, they just don't seem willing or able to find help for me. I have searched all round but have found that there is no local support in my area (N. Ireland). I spoke to one of my teachers and fair play to him he was the best in the world. Luckily I have him for two sciences and he is willing to adapt to my needs. He even downloaded information off the web for me! As for the rest of them, I've given up hope, people can be so misunderstanding. My teacher spoke to the head and has arranged for me to get 25% extra time and also larger print. I agree with the idea of maybe a letter of support from the group, if you all are willing to help? If you want to contact me my no. is 07985751376 (my email isn't working.) or write to me at 44 Drumbeg, Enniskillen, Co. Fermanagh. N.Ireland BT74 6NZ. Thanks again to everybody for your support, hopefully in time this situation will sort itself out.
Take care, Love Emma
Thank you so much for you support. I am finding it really difficult to manage at school now and all coursework has to be in by Friday!! I have been unable to receive an extension for my work as the teachers say I've had long enough. I took your advice and made an appointment with the vice head. Fortunately she was not too nice, she told me I'd just have to get on with things and try to adapt as much as I can. The school have provided for me as much as they can (So she says!!). I think that the fact I am in a Grammar school is a major factor, they just don't seem willing or able to find help for me. I have searched all round but have found that there is no local support in my area (N. Ireland). I spoke to one of my teachers and fair play to him he was the best in the world. Luckily I have him for two sciences and he is willing to adapt to my needs. He even downloaded information off the web for me! As for the rest of them, I've given up hope, people can be so misunderstanding. My teacher spoke to the head and has arranged for me to get 25% extra time and also larger print. I agree with the idea of maybe a letter of support from the group, if you all are willing to help? If you want to contact me my no. is 07985751376 (my email isn't working.) or write to me at 44 Drumbeg, Enniskillen, Co. Fermanagh. N.Ireland BT74 6NZ. Thanks again to everybody for your support, hopefully in time this situation will sort itself out.
Take care, Love Emma
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Shelley
Does anyone else here get photophobia? I have it really bad now that the sun's come out again and have spent the best part of 2 weeks confined indoors in darkened rooms. I admit I have it magnified because of my ME as well, but it's getting silly! My Dad says I should really get photochromatic lenses because they take the glare off everything, but my glasses cost £215 a throw and as a student I can't afford it! I'm hoping to get medical exemption from prescription costs - has anyone here been successful with that? I tried it before, but ME wasn't considered 'real' back then. Maybe the fact that I'm now on incapacity benefit will help? Does anyone know?
The worst part is I'm a computer science student!
Hope you're all well!
<a href="mailto:the-boss@little-miss-alien.co.uk">Shelley</a> xxx
The worst part is I'm a computer science student!
Hope you're all well!
<a href="mailto:the-boss@little-miss-alien.co.uk">Shelley</a> xxx
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