Quicktopic posts: Jun 2002

[Vera]

My brother has keratoconus and he feels he is the only
person in the world who is suffering. Therefore it is a real
comfort to know that there is a website which shares and
understands the problem.
He has recently been given scleral contact lenses and is
finding it difficult to put them in and once he succeeds
it looks as if his eye is filling with blood just under the
lens at the bottom of his eye. Once out his eye goes back
to normal. Any ideas? He seems to be doing everything right.
Keep up the good work.

Vera

[Sue Ingram]

Hi Vera, My eyes used to go quite red when I first started wearing scleral lenses (nearly 4 yrs' ago now) and it used to worry me, however, I peservered and my eyes seemed to settle down and get used to the sclerals and stopped going red - it was not quite like they were filling up with blood but more like they were very bloodshot and you could see all the blood vessels. I assume it is something to do with the eyes getting used to having something over the whole surface and also the oxygen levels. I wear my scleral lenses all day and my eyes do not go red at all now.

However, it would probably be best for your brother to check with his practitioner that everything is still alright, just in case; then at least he can carry on trying in the knowledge that he is not hurting his eyes.

He will definitely get used to putting in sclerals (or 'goldfoish bowls' as someone called them!) eventually - it does take some time (and a few tantrums!) but after a while, it becomes quite easy. Tell him to keep up the good work and to not get too frustrated. Take care. :-) SUE

[Tony Stigle]

HOW IS YOUR SPANISH?
From Daniel Hernandez
soy una persona con keratoconos soy mexicano y radico en mexico
distrito
federal quisiera saber si alguien habla espanol

(Translated by Tony on the Website http://world.altavista.com/sites/gben/p ... lfish/trns )

I am a person with keratoconos I am Mexican and I am in mexico federal district wanted to know if somebody speech Spanish
Contact Daniel Hernandez at dhernandez@cie.com.mx

[sarah marsh]

hiya there all
my name is sarah im 27 years old and i am currently waiting for my operation.I have already had one operation cancelled in april due to my hospital running out of graphing material.
i would love to chat with anyone who suffes from KC or even had operation.
please send emails to STARLIGHT7723366@aol.com
i will reply to all and would be very gratful to anyone who replys !
thanking you all
love sarah x

[Gillian]

One of my lenses is not as comfortable as it has been. My practioner has suggested I have a more comfortable lens for times when I do not have to have my best vision. I will not be able to drive with this lens and,therefore, will need to change for driving. Does anyone else have this arrangement?

I do find the constant 'threat' of not being able to drive a heavy burden - although I realise that perhaps I don't suffer as much as some. I find this site useful and thank you to everyone.

[Sue Ingram]

Hi Sarah, I have had KC for 25 years and am still managing with lenses - all sorts of different ones! Please email me on sue.ingram@virgin.net and I will let you have my telephone number, or if you just wish to send a message, please do. Take care and look forward to hearing from you. SUE

[Sue Ingram]

Dear Gillian, I am definitely the person to talk to about wearing different lenses for different occasions; I have about four different combinations, including lenses with glasses! It is the way to go if you are finding lenses uncomfortable - wearing different ones seems to give your eyes a rest. Like you, I am always worried about the driving thing but try not to think about it too much. It is something that I cannot actually do anything about; if I have to stop driving one day, so be it.

I wear my lenses with the best vision for those days when I need it most and wear my most comfortable pair (but not such good vision) when I am at home and it is not so critical that I see perfectly. I am often changing lenses half way through the day, etc, etc. This can be a bit of a pain but you do get used to it; it is better than putting your eyes through hell and not bearing able to wear any lenses at all the next day and therefore being totally useless. You will find the best way to manage for your own situation. It has also kept me off the operating table, which is fine by me. Take care and keep smiling :-) SUE

[Jillian Wolfenden]

I have had K for quite a while now. January 1998 I was registered blind. Unfortunately I do need grafts, but have been diagnosed inoperable as I am allergic to antibiotics and have 95% achance of rejection. K is in both eyes. I only look out of my left one as my right one is shot at. I am also allergic to plastic, so I cannot wear contact lenses. I tried this but to no avail, my eyes just streamed constantly and were really really red. It was so uncomfortable. I did persevere but, there you go. I can actually see quite a lot, it's just reading, watching television etc. Snooker is the best as the balls have about 5/6 trailers on them. I don't go out at night on my own as I have a tendency to watch street lights, they have trailers around them too. Car headlights are best. Sometimes you have to see the funny side of it or you'd cry.Well I hope everyone is keeping as well as can be expected. You never know with the advances in technology they may invent some ultra cure in the not to distant future. Here's hoping. Everyone look after yourselves By the way I'm 41 years young.

[Jillian Wolfenden]

Dear Sue, Forgot to leave you my E. mail address. It's
auntiejigglypuff@hotmail.com Thanks, if anyone else wishes to write. I'll answer all e.mails. Cheers Jill.

[Vera]

Dear Sue

Thanks for the advice. Will let you know how my brother
gets on. Any other pieces of advice will be gratefully
received.