UK Keratoconus Self-Help and Support Association

Hi everyone, I’m writing again as your responses were so helpful last time but I’m in need of advice again.

I currently have RGP lenses which I’m unable to tolerate as they’re simply too painful. My vision with my glasses, however, is not great and most days I have problems seeing properly. I returned to Moorfields to be fitted for Kerasoft lenses and now have them, but have been told that because the disease has progressed to a moderate level in my left eye, they’re not really suitable. I can see ok in them but not brilliantly and they tell me that even if they were to adjust them it will probably be in vain. They’ve said my other option is piggy backing but I have to wait a month for another appointment to be able to try this option out. I guess I’m wondering how comfortable wearing 2 lenses in each eye will be considering how painful I find wearing the RGP lens on its own. What have other people found?

I do think the staff at Moorfields are great, but right now I just feel so frustrated and upset as I’m having real problems functioning day to day. The unfortunate thing is that I’m in my first year of a doctoral level course and so as you can imagine I have an awful lot of reading to do and the amount of work is extremely intense. I’m finding it difficult to read certain type faces (such as Times New Roman) and having to spend long amounts of time at my PC leaves my eyes sore and painful.

I’m just wondering if anyone has any advice regarding equipment or is able to offer reassurance about coping with this condition as I’m really finding the whole experience quite distressing. It is wasn't for the forum I don't know what I would do. I can't tell tell you how much comfort I get from reading about everyone's experiences and knowing that there are other people in the same position who have come out the other side. This site offers so much support and I just want to thank you all for that.

Vikki

Hi Vikki

If you are studying or in work for that matter you should be able to get support for matters such as reading and pc work. Access to Work is a scheme run through jobcentre plus that helps people who are in work stay in work or get back to work. They would arrange an assessment and this would mean that an organisation such as RNIB or Action for Blind People would get involved and recommend assistive equipment such as CCTV magnifiers (you place the text underneath the lens and it magnifies to your required level, can change colours and contrasts etc depending on how sophisticated the CCTV is) and specialist software such as MAGIC (that can magnify, read text etc).
If you are a student you should also have access to such services, I would expect via your head of department or you can contact RNIB or Action for Blind People yourself.

The student leaflet on the site may also help.

If you want to know more you can phone me if you like. I am not an expert however, did have very similar experiences to what you write several years ago.

best wishes & take care

Susan

Hi (again) Vikki

Spookily just noticed we both signed up on the 25th Jan me in 2004 and you in 2008.

Send me a PM and I will let you have my contact number if you want to discuss.

Susan

Vikki

I worked as a University Chaplain before coming to my present post. In those days we would arrange for students (under or post graduate) who had visual problems to be provided with special reading equipment. You should go, by way of your supervisor, to your University's equivalent of learning support or student advisory service and have your needs assessed.

In my study at home I now have some really fancy kit that was provided by my employer in co-operation with the Access to Work Team at JobCentre Plus. this is exactly the sort of stuff we used to arrange for students and includes the universal access protocols embedded in Mac OSX, a video magnifier etc.

I have trouble with palatino and Times New Roman, and usually just change all fonts to something like Optima.

What is your field of study?

Andrew

Hi Vikki
Just to add on the lens front that quite a few people here get on very well with the 'piggy back' system, so it's definitely worth a try. And if for any reason you find it's not for you, there also the option of scleral lenses which also can be a godsend for those who can't tolerate rgps. I hope it doesn't take too long to find the right solution for you.
Anne

Thank you so much for all your comments (and Susan for being so kind on the phone). The information you've given me is fantastic and I'm so grateful for your support. When you're new to all of this, as I am, it's hard to know where to start and the amount to get your head round is immense. Having this forum to share experiences is invaluable and has helped me so much.

I've contacted the tutor responsible for matters related to disability at my University, and am seeing him at the end of the week to discuss the options you've suggested. In response to your question Andrew, I'm training to be a clinical psychologist. At least my experiences should hopefully allow me to be a better clinician in terms of understanding what it's like to go through something like this!

Thanks again!

Vikki

Vikki

I have friends who are clinical psychologists; they work in a hospital in Newcastle.

All the best with your study.

Yours aye

Andrew

Thanks Andrew.

I'm based in London but if I ever go to Newcastle I'll say hi to them!

All the best

Vikki

I don't imagine that the community of Clinical Psychologists is all that large; you are sure to come across them even if you never go to Newcastle!

You know the rule of 'degrees of separation'. It holds that in all the world any two people are no more than six handshakes apart. That is I know A who knows B who knows C who knows D who knows a Tibetan Hill Farmer called Rajit. Well in small communities like United Kingdom Clinical Psychologists that chain has to be no more than a single link .. Vikki knows somebody who knows my friends in Newcastle.

Andrew

Hi sorry to hear that you are having a tough time, it will get better. Just a thought though which may help on the computer is if you go in your programs accessories tools, there is a tool called a magnifier which magnifies the text, that seems to really help me when I'm struggling to read.

Hope this helps xxxx