To all who have joined this forum recently

[Michaela]

Thank you very much Anne!

I actually don't know if we have real disability units here, but thankfully I have to say that there is no problem with getting help, most of my professors know that I need my own enlarged sheets, everyone is very helpful and understanding, if i mention the problem. But sometimes I'm just tired of telling and asking for help, if I can avoid it, so it is my own fault if there are problems. I haven't worn sunglasses or baseball caps on stage yet, maybe I should ask about that, I guess it would depend on the conductor/ensemble.
I already read the leaflet and I must say that it is great! It informs teachers about how to support students with KC and explains all the problems that might occur. I think I will translate it and hand it out to my teachers.

Thanks again and all the best
Michaela

Hello Michaela,
I don't know what help is available for students in Austria - here in the UK most colleges and universities have a disability unit which helps students who have health or sight problems. Is there anything like that in Austria? I'm also pretty sure there's an organisation here which provides an enlarging service for sheet music - again maybe something to explore in your country. Not sure what you can do about on stage lights. Many of us wear sunglasses or baseball caps to help cut out glare, but maybe that's not acceptable in an orchestra!
Hopefully things will improve a lot for you when you're able to have a graft. In the meantime, you're not alone - lots of us can relate to the effects on emotional well-being that you describe. We've produced a leaflet on 'Supporting Students with Keratoconus' which you can download from our site http://www.keratoconus.group.org.uk/sit ... tions.html
I think you'll recognise a lot of what it says there!
I know we have other musicians among our members - maybe one of them will have some other ideas for you.
All the best
Anne

[Fionau]

Hi folks

I'm Fiona and new to this forum today which I came across when looking for the telephone number of the Edinburgh Eye Pavilion.

I was diagnosed with KC in my left eye back in 1981. In 1982 I got my first hard contact lens, and my right joined it's best friend about 18 months later.

I've been on my own with KC until today, nobody I know has this condition, nobody that I know knows anything about it. I haven't had any major issues so haven't looked online for any info on KC. I was surprised to see this very active forum, and it's great.

To be honest, my condition is classed as mild, and could be down to the fact that I wear my lenses from the moment I get up to when I go to bed. I still wear rigid lenses albeit that they're much more advanced than they were 30 years ago.

I was sent to the Eye Pavilion in 1981 who put me out to local care, and seen by them on annual basis until I dropped off their books around 1990. I returned to them last year, to be asked if I had been there before! A lovely brand new file had been created. I've been told by them that I will be seen by them on annual basis, and the best part of it all, I get state of the art lenses and not to mention a free eye test now.

Enough of my rambling now.

Best wishes to all for 2012.

Fiona

[TheFlyingCouch]

hI From Gloucester, i have just joined and am looking forward to finding out more about KC, Just this week i have been trialing a pair of clipon lenses that have an orange tint for night driving. So far they seem to work well, but to make them into my prescription is a tad expensive!!

Regards
Jonathon

[Andrew MacLean]

hello Jonathon

Welcome to the forum.

Andrew

[ahfs]

Hi folks

I'm Fiona and new to this forum today which I came across when looking for the telephone number of the Edinburgh Eye Pavilion.

I was diagnosed with KC in my left eye back in 1981. In 1982 I got my first hard contact lens, and my right joined it's best friend about 18 months later.

I've been on my own with KC until today, nobody I know has this condition, nobody that I know knows anything about it. I haven't had any major issues so haven't looked online for any info on KC. I was surprised to see this very active forum, and it's great.

To be honest, my condition is classed as mild, and could be down to the fact that I wear my lenses from the moment I get up to when I go to bed. I still wear rigid lenses albeit that they're much more advanced than they were 30 years ago.

I was sent to the Eye Pavilion in 1981 who put me out to local care, and seen by them on annual basis until I dropped off their books around 1990. I returned to them last year, to be asked if I had been there before! A lovely brand new file had been created. I've been told by them that I will be seen by them on annual basis, and the best part of it all, I get state of the art lenses and not to mention a free eye test now.

Enough of my rambling now.

Best wishes to all for 2012.

Fiona

Hi Fiona!
Very interesting you story about KC. I'm Sam from Russia Moscow and I know nobody with KC so long experience. I was diagnosed with KC in my left eye in 2011 but I suppose that I had it since 2003-2004 year, so what future for my vision shall I expect?

[Anne Klepacz]

Hi Sam and welcome!
That's the hardest thing with keratoconus - trying to predict the future. It varies so much from person to person. With some it stays mild, with others it progresses for a while and then stabilises, for a few it just goes on progressing. But most people with KC manage pretty well most of the time with specialist contact lenses. And there are new options coming along all the time, so the main thing is to stay positive!
All the best
Anne

[ahfs]

Hi Sam and welcome!
That's the hardest thing with keratoconus - trying to predict the future. It varies so much from person to person. With some it stays mild, with others it progresses for a while and then stabilises, for a few it just goes on progressing. But most people with KC manage pretty well most of the time with specialist contact lenses. And there are new options coming along all the time, so the main thing is to stay positive!
All the best
Anne

Hi Anne,
I have normal vision with the help of ym right eye, so the question is - shall I wear lens only in my left eye for KC stopping, but a lot of ophthalmologists say that lenses don't prevent KC. And it is very uncomfortable to use lenses. Does anybody try to do some eye gymnastics to improve vision and eye condition, as example
William Horatio Bates methodic?

[Nik]

Hi All,
I am Nikhil & was recently diagnosed with KC at the age of 32. I have to admit this has been the most difficult period of time in my life, since no one had even heard about this in my entire circle of friends or relatives. So I had a tough time trying to find information about the condition & understanding what it meant for the future. Even then, websites like Wiki or Mayo Health can only pass information, they can't share life stories & experiences that makes the interactions human.
And then I came across this forum, it was like discovering a small secret garden that has possibly the answers to all doubts & queries I had been having. I have found this to be the most active & informative forums for anyone with KC or looking for information on KC.
Thanks to the moderators & the organization/group that has come up with this website for providing support through connecting people from across the world.
Nik

[Andrew MacLean]

Hello Nikhil

Welcome to the forum.

Every good wish.

Andrew

[ChrisHolloway1]

Hi all,

Just joined the forum, after seeing a poster in the clinic the other day (although I was aware of the site before after a bit of googling).

Recently got diagnosed with KC, it's taken a while to get to the point at which the problem has a name, initially went to the doctors who sent me to the emergency eye clinic (not the main eye clinic) who told me I just needed glasses, optician referred me back to docs, docs back to clinic, not being the patient type I just ignored the problem, (my left eye vision remains at 20/20 for now) right eye was blurred. However this has deteriorated recently and with the emergence of what I can only describe as what looks like a hair accross my right eye vision I decided to revisit getting this sorted, this time I was sent to the opthomology department where the doctor told me what I already knew at this point - I had KC. My eyes are very uni-lateral, I have perfect vision in my left eye, and can't read a single line on the opticians chart in my right eye, but overall my vision is normal because of my left eye. I am now waiting on an appointment to get a RGP contact lens fitted, and go from there.

Wasn't feeling grand yesterday after the eye clinic, however I'm over it now - the condition having a name isn't going to affect me and I've been living with it for a couple of years now. I'm a mountaineering instructor and work in an outdoor education centre, not had a problem with this role as I only have one affected eye at this point, however should this develop in my left eye I will no doubt have to leave if my vision cannot be corrected sufficiently - since an inability to check knots, safety gear etc would be potentially detrimental to clients health!

So that's me, I'm not freaking out, and I'm certainly not going to change my life plans/goals. My aim now is to get on with things, and hopefully put a bit of time and effort into some fund raising for this group (one perk of being an instructor of outdoorsy things I guess), maybe run a sponsored climb or mountain walk to raise some money.

Anyway just thought I'd introduce myself and say hello, taking some lovely kids from a local primary school climbing now which will take my mind off things somewhat!

Nice to meet you all

Chris