To all who have joined this forum recently

[Anne Klepacz]

Hi Daniel and welcome to the forum,
All the best with the new lenses and with your Master's course. Have you seen the 'Supporting Students with KC' leaflet that you can download from the home page and give to your tutors? www.keratoconus-group.org.uk/sitev3/publications.html
And if you'd like to be on our mailing list for regular newsletters, conference DVDs, details of KC Group meetings in Birmingham and other info, just e-mail your postal address to anne@keratoconus-group.org.uk and I'll send you some info.
Anne

[Mammal John]

Hi, new to the forum.

I was diagnosed with keratoconus about 3-4 years ago. Currently the vision in my right eye is significantly worse than my left eye although both are stable and I am using glasses and coping OK with them although vision is not perfect with them. I will be undergoing cross linking on the first eye in the next few weeks.

John

[felipe]

Hi, my name is Felipe, I'm 21 and I'm from Brazil.
Unfortunately, I have that disease
So, I was looking for someone who did keraflex. I'm very curious about the results and I found this forum.

Anyone could show me a topic with that subject? I'm little lost yet,

Thanks a lot!!

Ps. If I wrote anything wrong sorry for the english

[Andrew MacLean]

John and Filior

Welcome to you both.

Andrew

[munster]

Heya, I'm new and just joined.

I'm 37 male from St Helens N/W england. My Keratoconus was diagnosed about 2005. I started to wear glasses, and now moved to Kerasoft lenses.

I used to work with computers and now I'm a professional driver in my job.

Sometimes my eyes are sore first thing in the morning and I can't use my lenses. When this happens, I usually stay off work. I can use glasses for about 3 hours before my vision starts to blurry/out of focus and my head starts to ache around my temples.

I'm left eye dominant with moderate progression left eye and more progression in right eye.

I currently have a few problems with my general vision, so I will describe as best as possible what they are.

My current contact lens is not happy.
- I have slight focus fluctuations and a slight soft/out of focus distance field of vision.
- I also get image glare from the edges of colour changes. More so from high contrast and illuminated things.
- Considerable light halos from night time lighting and in dim areas or bright lights.
- Takes about 2-3 hours on average for my vision to stabilise after putting my lenses in, in the morning.
- Sometimes my glasses are useless on an evening after removing my lenses because I can't focus thru them.

I have tried hybrid lenses (hard centres with a soft lens edge) but I had considerable glare with those. My lens fitter is now going to try me with dual lenses (daily disposable soft lens and a hard lens over the top of it).

I'm off to see the eye consultant about intacs and also why I sometimes lose vision focus with glasses.

Anyway, enough of boring you all with my story. Its great to speak to some other like minded people. My employer doesn't understand it when I say my glasses don't work with my eyes today.

BTW, my health is going thru a down period at the moment. I had kidney stones last year that required a couple of operations. I'm also listed to have my gallbladder removed in Jan 2012.

Munster.

[Andrew MacLean]

Munster

Welcome to the forum

Ouch! Kidney stones are better gone than hanging around.

You raise a lot of issues; perhaps the one with which we can offer the most immediate practical help is the business with your employer: print off the factsheet
(you'll find it here: http://www.keratoconus-group.org.uk/sit ... tions.html)

If this doesn't help get back to us.

All the best with the intacs.

Every good wish

Andrew

[Michaela]

Hello everyone,

my name is Michaela, I am 28 and my keratoconus was diagnosed when I was 23. Until about 1 year ago I managed perfectly well with contacts, but the last few months turned more and more into hell. I suffered from an acute keratoconus this summer and the doctor I went to misdiagnosed (the doctor I usually go to was on holiday, so I had to wait for almost a month to get proper treatment). Currently I am waiting for a transplant, but in the clinic they told me I'd have to wait at least until April. Though my eye (it was the left one by the way, the right one is in slightly better shape) has improved a little since then there are still bad days when I have a really hard time coping with my situation. First when the decision was made that I would get grafts I was happy, or.., well...., better said positively accepting. But now I am just angry for having to deal with that painful and life-altering disease. I try telling myself that I could be much worse off and that other people have to carry far heavier burdens than me. But of course it does not only affect my emotional well-being but also my daily life, as I'm sure you all have experienced as well. I study french-horn-playing at university and it is a real pain in the a... sometimes not being able to read sheet music, drive places at night, to have problems with the light and contacts on stage, and worst of all: because of all those problems not being able to put your whole attention and focus into playing beautiful music.
Does anyone here feel the same? How do you cope with your emotions, get a more positive attitude to life, in spite of keratoconus?

I hope you don't mind me writing here as I'm Austrian and not British, but I started to read through a few topics here and realized that there were still people with KC who had a positive attitude and some humour left. Thanks for that, by the way!

Michaela

[Andrew MacLean]

Michaela

Welcome to the forum. I studied in Salzburg, and nobody there seemed to mind that I was British and not Austrian.

I guess we all share many of the frustrations of having keratoconus. I guess we focus on the things we can do rather than fret over then things that we cannot. That sounds easy, perhaps even a little glib, but if it is good advice it has been wrought on the anvil of a lifetime's experience of finding old pleasures become impossible.

Every good wish.

Andrew

[Anne Klepacz]

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 www.keratoconus.group.org.uk/sitev3/publications.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

[Michaela]

Thanks a lot Andrew!

Usually I can deal with most of the problems, but sometimes there are days when I just wanna cry and scream. When I posted here last week I had one of those days.
Generally I try to focus on the things I can do and enjoy, and there are plenty, like going to Salzburg in two weeks for a short holiday by the way. I love that city, must have been great to study there.

Oh, and I also meant to say that I suffered from a corneal hydrops, not an acute keratoconus (I don't know if that would be right as well), I just didn't find the right translation then.

Thanks again, I'm feeling much better now!
Michaela

Michaela

Welcome to the forum. I studied in Salzburg, and nobody there seemed to mind that I was British and not Austrian.

I guess we all share many of the frustrations of having keratoconus. I guess we focus on the things we can do rather than fret over then things that we cannot. That sounds easy, perhaps even a little glib, but if it is good advice it has been wrought on the anvil of a lifetime's experience of finding old pleasures become impossible.

Every good wish.

Andrew