Is this a disability?

[Bluewolf]

I was just recently diagnosed with KC. The guys at Moorfields told me that my left eye (Everything is a blur with this eye) is one in a million and that my right eye will end up the same. I have an another appointment in May. Normally I would just wait but the problem for me is that I am going to university in September. I have to fill in my Student finance information otherwise I won't get it in time when Uni starts.

Is this a disability that and if it is. How do I tell the Student Finance people? What evidence do I need since my next visit to the experts are in two months? Just to be cheeky are there any benefits involved? Since I'm a full time student any extra money would help.

Oh and from reading this forum. Scleral contact lenses seems cause a lot of problems. I am due to get them in my next appointment at May. In May and June I will have exams up to my eyes (sorry for the pun). Is it worth wearing them because I can't risk not doing the exams.

Thank you for reading my post and an extra thank you to those who reply.

[Andrew MacLean]

Bluewolf

Some of us are, or have been, registered as partially sighted, and some are or have been registered blind.

If your consultant ophthalmologist registers you in either of these ways the matter is straightforward enough. Your local authority will issue you with a registration number and you quote this every time you seek to claim any right that accrues due to your status.

Even if your consultant does not register you, there are certain rights and protections to which you are entitled. Take a look at the leaflets for employers etc that you can find on the KC group website.

Welcome to the forum.

Andrew

[Lizb]

Bluewolf, just remember that what you are reading on here is (a lot of the time) when people are having problems and want other peoples views. just because there are a number of people on here who have had problems with sceral lenses doesnt mean that there arent the same number of (or more) people who get on successfully with sceral lenses. It could be that scerals wont suit you, but as you will have to build up your wear time with them anyway you could probably build your wearing time around your exam timetable.

There are a number of different lenses out there and as has been mentioned KC is a bespoke condition and what cuases problems with one person wont cause problems for the next.
It may take 1 fitting session (brillant though highly unlikely ) but it will probably take several fitting sessions to get the right lenses for you. If sceral lenses dont work for you, moorfields are going to have other options for you to try. Personally i have tried 6 different styles/combinations of lenses - some of these worked for a while, others i couldnt open my eye with...

The trick with CL fitting for KC is to make sure you articulate to the fitter how the lens feels at any given moment, what the benefits are and what the problems are - for example no problem putting the lens in, but can never take it out, how it feels (this is very difficult to describe sometimes), how your eye feels with the lens in and after you have taken it out (dry, sore, icthy, no problems) - and dont forget each eye may react differently to different lenses and different conditions. for example you may get on great with the lenses when at home/work but out in windy conditions your eye feels uncomfortable/gritty etc
i found writing everything down (eye issues and what i had been doing) helped especially between appointments so i could give that list to the fitter, rather than try to remember things. The fitter may get a great fit, however it could be the most uncomfortable feeling to you, but unless you tell them that it wont be resolved. I know when i have had lenses in the past we settled on slightly less vision but more comfort for me - if it isnt comfortable then you are less likely to wear CL.

[Anne Klepacz]

Hi Bluewolf,
Have you found the 'supporting students with KC' leaflet which you can download from the home page of this site? http://www.keratoconus-group.org.uk/sit ... tions.html
Other students who post on this forum will be able to give you better information than I can, but there is certainly help available from the disability unit at uni and it's certainly worth mentioning your KC when applying for finances. There is a disabled students allowance I believe. I don't know what the criteria are, but you may well be eligible if your KC is severe.
As far as sclerals are concerned , lots of people find them very comfortable and wouldn't want to wear anything else! Though as with all contact lenses, it does take a few weeks to get used to them and build up wear time.
And if you'd like me to send you more information (information booklet on KC and DVDs of conferences we've held) just e-mail your postal address to anne@keratoconus-group.org.uk and I'll post them to you.
All the best
Anne

[space_cadet]

re a disability "anything which affects your day to day life be it on a physical, mental, emotional, learning level can impact upon all of you, and in turn leave your life feeling disabled as nothing you do is within your control due to the experiences you have, whilst several people could have the same diagnoses, no 2 peoples expereinces are identical"

someting I wrote when analysing parts of the disability discrimination act 2005 for uni.

The United Nations, Human Rights Act, and severel countries governments sadly disagree upon what conditions can be defined under the word 'disability'

Personally speaking Id say it is worth filling out a Disability Living Allowance form if you are in the uk, and alwyas do so describing you at your worse, as hard as it is to think of your worse days, it pays (if you excuse the pun) to remember them.

Lea
xox

[Bluewolf]

Thank you for your information. I just want to ask one more question. I am in the process of filling in my Student Finance application. With this application the quicker you send it off the better. Last year thousands of students ended up with no money and I don't want to be one of them.

However it leaves the problem of my eyes. If i need evidence of my bad eyes. Would I have to get it from the guys at Moorsfield? When I was there I could tell they were very busy with a lot of patients. Could I just get this signed off by my GP? Besides my next appointment at moorsfield is in may.

[Anne Klepacz]

Hi Bluewolf,
Moorfields should have sent a letter to your GP after your first appointment so he may well have the evidence he'd need to back your application. If it hasn't arrived yet, he should be able to chase it up and/or get Moorfields to write the necessary letter for you.
Good luck
Anne

[Loopy-Lou]

This is the problem we don't have enough formal status which is really needed for education/employment