Quicktopic posts: Jan 2003

[Susan Mason]

Rosemary contd.
Sorry about that the connection went and I didn't want to loose what I had already typed so now we have two messages. Anyway as I was saying back in around August I asked quite a few questions at the hospital and the partially sighted one came up and the optometerist advised me that my case was not severe enough as yet, maybe now I am struggling with the lenses (I still have not had a correctly fitted pair and I have been attending since June)and if things do not get better I should ask again.
Anyway once again thanks for your thoughts it helped a lot and I am trying to start the New Year feeling a little more positive again. Having read some of your posts since it sounds like I am having it easy at the moment and I respect you for getting on with it seemingly so well, hopefully I will be able to do the same after all as I keep being told it could be far worse.

One last question for anyone really, how do you easiest make someone understand just how difficult it is for us to see when we have KC? Everyone I meet seems to have absolutely no idea and most seem even more confused when I try to explain. Even at the hospital recently when I saw one of the docs in the emergency clinic, as my optometerist was worried I may need treatment for an infection. The nurse who took me through to be examined wanted to do an eye test. I told her I couls read nothing on the chart without my lenses in which I had been told not to wear. She asked what about your glasses I told her they no longer helped me and that I had KC she looked at me blankly and still insisted I hold the balck eye shield over my face and read the letters. When I could not she picked up a smaller chart and started to run towards me with it asking me to shout out when I could read the letters. I thought my husband, who was at the door holding my coat and bag was going to wet himself and then to cap it all when I saw the doc he again said "Do you really see that badly?" Thankfully I was having a good day and just replied "I have KC have you read my notes?" on a bad day I may have sat and cried for 30 minutes. (who would believe me when I tell them I was only 3 rooms away from the once I usually see the optometerist in?)

Sue Ingram - thanks also for your reply and once again sorry for the delay in a reply. I think I have covered most of the points in the two posting and will keep you all updated.

Thanks again to all and once a gain HAPPY NEW YEAR and all the best for 2003.

[Neill Duff]

Hi... can anyone recommend a KC lens practitioner in the Reading or Cheltenham areas. Thanks Neill

[Dal]

Hi all

Happy new year. Am still waiting for appointment at western eye hospital for hard lenses, but this is taking forever and in the meantime I cant really see very well not with my specs or soft lenses(am finding it hard to read and see the letters on the comp keyboard). A friend has suggestes going private, just wanted to know is it worth it, or should I just be patient and wait. (I know it sounds trivial, but its realy getting to me, sorry!!)

Dal

[Grandmother Judy]

My 15year old Grandson, who lives in Switzerland, has very recently been diagnosed with Karatoconus. He has just obtained his lenses and it is taking time to learn to adjust to them. In the meanwhile life must be difficult, as he attends school, but cannot participate,as before. Would any younger members, suggest which aids may help him over this period,and how the school can be supported in providing him with a pleasant day.
Thank you for any help and support Judy

[Janet Manning]

Hi Dal,
Have the same problem with the computer keyboard. Am trying to learn to touch type, but in the meantime have added large letters to keyboard with sticky paper. Works a treat!
Janet

[Dave Hamblett]

Dal,

When i was first diagnosed i was sent to leicester quite a way for me so i went to my local optician who happens to be a consultant at the hospital as well, he was happy for me to have my first rgp lenes fitted with him and then to move to the nhs as it saves a lot of money which being a student at uni i dont have!
it cost about £120 for my first set then down to £40 something on the std nhs charges for those since ( they keep changing every 3 - 6 months)
So i found it worth going private while i swapped hospitals to coventry where i still see the same optician and his team
as i had to wait 3 months for an appointment all over again
hope this helps
Dave

[Maria Gabriella]

Keratoconus

[Maria Gabriella]

Hello,
I have been diagnosed with KC at the age of 18 in Switzerland. The doctor then prescribed hard contact lenses but I was young and didn't care. My sight wasn't that bad so I didn't bother about the lenses.
Now, 23 years later I can't bearly read with my right eye. My left eye is fine, only slightly affected by the disease and it compensates the weakness of the right eye. I am currently living in the UK and therefore dependent on the NHS. I am not quite sure how familiar they are with KC. Could you please give some advise on how to convince my GP to refer me to a specialist? I read somewhere on the web that KC is more wide spread in the German speaking countries then in the UK. What do you know about that?
Should I consider hard contact lenses or shall I leave it as long as my left eye does the job?
Thank you for any answer
Gabriella (41) Birmingham

[Cone Eyes]

DLK surgeons in the Midlands area

Has anyone had DLK in the Midlands or know of surgeons who practice this form of surgery in this area?

If so can you supply names / hospitals etc

Thanks

[Michelle]

Today is the first time I have looked at this web site
I have found it very helpful, I was diagnosed with KC about 3 years ago so am still in the early stages, so I would just like to say Thank You and if anybody would like to e-mail me at michelle.ryan82@btopenworld.com I would appreciate it.

Thanks again
Michelle