KC & Uni

[Tiba]

Hi, I've now had KC for 7 years and have been coping fine with a hard contact lens in my right eye. However, blood vessels have appeared on the surface of my right eye as it has not been getting enough oxygen, meaning that I have to cut down on my contact lens wearing time.

I do have glasses, but I don't feel confident at all with them on. I think that this will be most problematic when (hopefully) I will go to uni next year, my parents will not be there to encourage me to take my contact lens out and I may fall back into my old habits of self-denial.

I was wondering if there is anyone who has first hand experience with having KC at uni and how they have coped, whether you are currently studying or have been through the whole experience.

I would appreciate any advice as I am feeling a bit down about the whole situation, thanks!

[Anne Klepacz]

Hi Tiba and welcome!
I'm sure some students will come along shortly and tell you how they manage. In the meantime, have you found the leaflet you can download on Supporting students with KC at www.keratoconus-group.org.uk/sitev3/publications.html
Might be useful to give to the Disability Unit at uni (and to your current teachers if you're now doing A levels).
All the best
Anne

[Andrew MacLean]

It is so long since I was a student with KC that my experience would be pretty useless to you, but I was a member of University Staff with KC, and know the work that Universities do to make life possible for students with any sort of disability. Print off the leaflet that Anne has suggested and take it to your advisor of studies (or whatever your university calls the member of academic staff who is responsible for your academic welfare. You will be put in touch with disability services.

Every good wish

Andrew

[space_cadet]

*waves*

you are eligiable for DSA (disabled students assesment) which in effect will enable you to have a notetaker, who can get the notes to you in your prefered format, software for a laptop or desktop, a desk top or laptop puter, and many more perks.

Whilst I have had positive experiences with the disability unit where I study some of my tutors responses have been less than desireable but Iv plodded on and kept on at them, as know I am eligiable for additional support so will ensure my education is still deleivered.

feel free to private message me

Lea x

[Tiba]

Thank you for all your quick responses and I will definitely print off the leaflet as proposed by Anne.

PS- Merry Christmas to all!

[sarah.w]

Hi Tiba

Sorry for the very late reply. Im 24 now and finished uni in sept 2009. I was diagnosed at aged 11 and have been wearing sclerals for a fair few years now. I was really apprehensive before i started uni because i had KC and i didnt want to stand out with my lovely big sclerals!
I was offered lots of help from the disabled students people but to be honest i didnt take them on their offer as i wanted to be as independent as possible. I did finally give in however, in my 3rd year though as they offered me a laptop so i couldnt refuse! They also gave me some great aids such as a dictaphone and there are other programmes which type as you speak into a microphone (great for when your eyes are so so tired) i think its called dragon naturally speaking and a programme for enlarging stuff on your PC (claroread).
When you get to uni seek out your DSA people and im sure they will be happy to help. My tutor was fantastic so if you have a good tutor you can approach, tell them sooner rather than later so they will understand if you have any problems later on.

It is hard sometimes but my friends wre brilliant at uni and lecturers too, i did physio so even when i didnt have my lenses is (i cannot see a thing and cant wear glasses) i just listened to them rambling off revision stuff or listened back to a dictaphone of lectures etc and it worked! It wasnt easy but uni was am awesome experience. You will have bad days but you will have really great days too and your friends will always pick you up

If you have any questions just let me know, i hope this helped
sarah x

[sarahrose]

Hi Tiba,

I'm new to this forum and this is my first post, so hi everyone! Thought I might be able to help you out though.

I graduated from Uni in 2009. I was diagnosed when I was 13 and worse RGP until 3 months ago when I started wearing sclerals. For my first two years at uni I coped fine, but for my last two years I had difficulty wearing my contacts for more than an hour or two, and for my final year I couldn't wear them at all. I wasn't aware until reading this post that I would have been entitled to DSA, but the students with disabilities group did provide me with a lot of help. I was given extra time in exams and rest breaks, as well as enlarged exam papers to make it easier to read. I was also in a seperate exam room with other students with disabilities, which was great, as there were fewer and much more space, I felt a lot les stressed than in a huge exam hall with hundreds of people. A

t my uni you could also fill in a mitigating circumstances form each year, which basically describes any problems you might have had throughout the year that would affect your coursework or exam results. These forms are then considered when deciding your degree class to make sure you are treated fairly compared to students that didn't have any problems. I would recommend finding out if your university has a similar procedure (which I am sure they will) as these forms can make a big difference to your degree results. From the marks I got in my exams I should have been given a 2.2, but I received a 2.1 as they felt I would have had better exam marks if I had been able to wear to my contacts long enough to revise properly!

I hope this helps, don't panic, universities are there to help their students do as well as they can, so just ask for help. Also, don't be afraid to talk to your friends and the people you live with about KC and how it affects you. My housemates were great and really supportive at times when I was getting really frustrated with my eyes.

Sarah x

[sarahrose]

Hi there,

I'm new to the forum, hello! Thought I might be able to help here, and I was also wondering if you could help me.

I finished my undergraduate degree in 2009, with some help from my uni due to KC, and I am now a postgraduate student working for a PhD. Until I now I wasn't wear KC made you eligible for DSA, so I was wondering if anyone could help me with how I go about applying for this?

Whilst I was at uni I had difficulty wearing my contacts for more than a few hours at a time, this meant I would wear them for lectures, then have to take them out in the evening, making it difficult for me to revise for exams. At my uni we had something called a mitigating circumstance form. This explains any problems you may have had that would affect your results in exams and coursework (such as me not being able to revise!). These forms are then considered when assigning your degree to class to make sure your a treated fairly compared to students that didn't have any problems. I would definitely find out if the uni you go to has a similar systems as these forms made a difference between a 2.2 and 2.1 for me, so worth it if you think you will perform worse than your usual ability! I also had rest breaks in exams and extra large exam papers, which were really helpful. I was also put in a separate room for exams with only 5 - 10 people in, which made the whole exam process a lot less stressful!

I hope this helps, don't panic, universities are they to help you do the best that you can do, so just ask for help! Also, talk to your friends and the people you live with at uni about KC and how it affects you. My house mates were great and really supportive when I was getting frustrated with my eyes. It's helpful if they know what is going on, so they can give you a massive wave when you are meant to meet them somewhere but can't see, or read subtitles in the cinema to you!

Sarah

[Anne Klepacz]

Hi Sarah and many thanks for your helpful posts.
You'll find more information about DSA at
www.direct.gov.uk/en/DisabledPeopleEduc ... G_10034896
You'll also find other helpful websites if you google DSA. And I expect spacecadet can tell you more. All the very best with your postgrad studies!
Anne

[sarahrose]

Thanks Anne, sorry I posted twice, I thought it didn't work the first time!