UK Keratoconus Self-Help and Support Association

Hi I've had KC since 19 (am 28 now) and I still get by with glasses. I've had a detached retina in my right eye sugically treated by a scleral buckling, I also have a cataract in that eye and have no real useful vision focuswise in it. Fortunately my left eye has deteriorated very slowly and I expect to have to wear contacts probably in the next couple of years. My right eye 'vision' continues to get more distorted and is a nuisance to my left eye vision. I used to have terrible eczema (I found out 5 years too late that it was caused by a nickel allergy and I used to wear nickel framed glasses!) and I used to rub my eyes furiously. Recently I've had an allergic reaction to some medicine (unrelated to KC) and it flared my eczema up on my eyelids causing me to rub them a lot and my vision has noticably got worse again since that.

Anyway I also have M.E. and I'm studying to be a music (piano and guitar) teacher. I did work part time (2 afternoons a week) as a teacher in a local music shop a few years back and my eyes used to feel so sore and tired afterwards - looking at music for 3 1/2 hours.

I wondered are there any other musicians/ music teachers on the messageboard or members of the group? How do you cope with your KC? I have been doing ear training exercises for over a year and consequently am developing a really good ear which will help give me a break from looking at scores all the time when teaching pupils, but does anyone have any tips? I'm sure people in many (most?) other areas of work/life have similar difficulties to overcome with their KC so any advice/tips would be very welcome.

Another thing which worries me is I need to take regular rests with me having M.E. and I don't know if it's possible to take out contact lenses for a short period and then put them back in? I've heard you have to soak them in cleansing fluid for a long period and protein removal tablets in water too. Can anyone advise me on this please? Have I got it right or wrong?

Also if anyone else has M.E. I'd love to hear from you.


Best wishes to all on the board

Jon Roberts

Hi Jon

I'm a bass player and my biggest KC problem is in my right eye as well. I started as an ear musician 17 yrs ago but usually playing on and off. When reading scores I try to avoid using the PC and try to print them on a larger format so I donÂ’t get tired quickly.

I guess that if your object is teaching you will need to dedicate more time reading music than I do dough.

I'm 34 and just starting to use my hard contacts, it's kind of difficult because I have VERY sensitive eyes, but when I manage to get them on I can see almost 20/20 from both eyes and reading music is a piece of cake.

I don't know if this message will help you at all, just keep in mind that there are lots of successful musicians with KC around the world.

Regards

G Candelario

Hey, thanks for the supportive message, I really appreciate it. I'm lucky that I haven't had to succumb to hard lenses yet - good luck with adapting to yours. I have very sensitive eyes too and quite bad eczema all on my eyelids and the surrounding area so I know it'll be tough for me too when it happens, but sure I'll manage.

Keep rocking/jazzing (if there's such a word!) whichever style you play.

Cheers,

Jon[/list]