Quicktopic posts: Mar 2003

[EAMONN GILLESPIE]

Hi Emma,
thanks for taking the time to write in relation to my KC request. I will take onboard what you said. It's difficult having KC - but i suppose i can't alter that fact- i just got to learn with it. How do you find living with KC ? What ways have you changed your life to accomodate it ? Eamonn



>From: QT - Emma Fletcher
>Reply-To: QT topic
>To: wellworths2000@hotmail.com
>Subject: Keratoconus
>Date: 19 Feb 2003 00:15:14 -0000
>

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< replied-to message removed by QT >

[EAMONN GILLESPIE]

H i Rob,
Thanks for your advice in relation to KC. Before when i wore the lenses i could wear them from morning to night - but now i find this is not so easy. The drops do make a a difference. Sometimes when you take the lenses out to soak them - if you put them back in again it hurts the eyes. S o the drops make a big difference, Its good to see KC is not stopping you from living your life. I hope everything works out on the school front. Eamonn

>From: QT - Rob Armstrong
>Reply-To: QT topic
>To: wellworths2000@hotmail.com
>Subject: Keratoconus
>Date: 18 Feb 2003 23:16:35 -0000
>

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[umbilica@umbilical.demon.]

ANthony said:
Hi everyone
For the past couple of years i have suffered with hair and nail loss and itchy rashes which some drs think may be connected to
KC also i have been unable to wear lenses due to blistering
under my eyelids and have been told that because i can only wear glasses for half an hour due to the headaches they cause ,will
not be able to work and have been put on incapacity benefit.I am only 33 and feel my life has been put on hold,and would really
love to work.

Hi Anthony,

Sorry to hear of your troubles.

It sounds from what you've said as if you certainly ought to be
registered as partially sighted at least, if you can only use
correction to your vision for that length of time. Have you got registered, and can you persuade your doctors to register you?

I don't know what work you were doing, and whether it might be
possible either to be trained to do it again with some
appropriate assistive technology, or to think of cross-training
for another job, possibly with the right sort of access
technology again? Have you had any chance to talk to anyone
about this?

If not, and if you'd like to think about this, maybe a good
place to start might be the DEA - Disability Employment Advisor
- at your local Job Centre (ring and ask for an appointment ...
if you can't use a phone book and are registered, you can get a
code number to use Directory Enquiries for free).

Good luck!

Can't help about the itchy rashes, nor hair and nail loss. I'm
told there are plenty of people with KC who also have problems
with itchy skin/eczema but personally am lucky in that area and
the only nails I've lost have been when a horse has stood on my
toes (!!) or I've done too much sponsored walking.

Rosemary

--
Rosemary F. Johnson

[Anthony Facer]

hi Rosemary
thanks for message,i dont think i can persuade my dr to register me partially sighted but am going to change gp when can.A litle difficult as live quite a distance from most drs.I have seen a disability employment advisor and it was there idea after seeing an occupatinal health nurse that i should be on incap benefit.I was an antique dealer so reading marks on porcelain silver etc very difficult,but think should try and train for something different -but not sure what!
take care Anthony

[Anthony Facer]

hi \Sue
thanks fpr suggestion will mention it when next see optician
regards Anthony

[Sue Ingram]

Hi Eamonn (1443), You mention that you cannot wear RGP corneals all day now like you used to be able to. This is exactly what happened to me after having worn them for over 20 years from the moment I got up in the morning, until the moment I went to bed, every day of the week. I think my eyes had just had enough!

Moorfields Eye Hospital then tried for over a year to try to get corneal lenses that would be comfortable, but to no avail. Each time I got a new lens, I hoped this would be the one that worked. In the meantime, it was a terrible struggle - I forced myself to keep the lenses in so i could work and drive, then had to take them out as soon as I got home, stop living and become a vegetable! In the end it was suggested that I tried scleral lenses - they cover your whole eye - and these have been my salvation.

Although they do not correct my vision as well as the corneals, they are 100% more comfortable. Then, what I found was that as the scleral lenses gave my eyes a rest from wearing the corneals, I was then able to wear my corneals again and used to swap lenses around as required.

Now, however, I have a pair of glasses that I wear with my sclerals and these bring my vision up perfectly. This appears to have made my corneals redundant! I do not even bother with the corneals any more - they just make my eyes too sore.

I just thought you might want to look into sclerals - you might find that they will enable you to wear your corneals more comfortably. I believe that all KC sufferers should be issued with a pair of corneals and a pair of sclerals as standard - that will be the day! At least then we are able to give our eyes a rest, just like any 'normal' person taking their lenses out and putting on their specs!

Take care and if you want any more info on sclerals, there is some on the KC Group website http://www.keratoconus-group.org.uk or you can email me direct on sue.ingram@virgin.net. Take care. SUE

[Gillian]

I fully agree with Sue - all KC sufferers should have a pair of sclerals for respite. I have recently acquired some and they are fabulously comfortable. As with Sue the vision is not quite as good as with corneals. I am hoping that I too will be prescribed glasses over the sclerals. Fortunately I can still get on with corneals most of the time but it is wonderful to have another option as glasses are useless. I wear the sclerals one day a week to give my eyes a rest. I would recommend that anyone struggling with corneals/glasses should have a try - nothing ventured nothing gained! Many practioners don't recommend them as they are very difficult to fit and quite cumbersome. It is a skill for both the prof and the patient to get the fitting correct and the lenses in without air bubbles. As KC is quite unusual in the general population practioners often don't bother to get to grips with sclerals. It is therefore very important to get them from someone who is familiar with them and they are then much more likely to be successful. It is essential that people with KC have the opportunity of investigating this option as it could, in some cases, prevent a corneal graft. Anyone considering having a graft should, in my opiniion, have tried sclerals first.

[Rob Armstrong]

Hi everyone.

Eight weeks have passed since my graft surgery, (although it felt a lot longer) and so far so good. I am getting back to normal more and more each week, the last patches of redness have faded and my eyelashes don't have gaps in them anymore! I had a check up last week and things are still looking promising, although it is still early days. I was told that wearing the eye shield at night is now optional, although it wouldn't do any harm to keep doing so, therefore I have decided to keep wearing it until the reel of tape is used up. To be honest I still feel a bit hesitant about going to bed without it. I also got the all clear to get my hair cut! Sounds trivial to anyone else, but it really did make me feel better. My vision still varies daily, some days are good, some not quite as good, but on the whole a definite improvement.

I have read some people's messages saying they have a high risk of graft rejection, and I was just wondering, unless you have already had a failed graft, how do you know this? What tests, if any, did you undergo? I was thinking that maybe I haven't had something done that I should have. My pre-op tests involved testing my vision, my blood pressure, providing a urine sample, and answering some general questions about my health. I have never had any surgery prior to the graft. Also, it was explained to me that it's difficult to predict the success of individual cases. I'm pretty sure scleral lenses were never mentioned to me, however my right cornea was showing signs of scarring, that is why it was decided to put me on the waiting list.

I have continued my weekly photographic record, but as I recover, and perfect the technique, each succesive set of photographs is superior to the previous ones. My first attempts now look extremely poor in comparison. With a bit of help, I managed to take some photographs that clearly show the distorted profile of my left cornea, and the smooth curve of my new grafted one. I was surprised how obvious the distortions are. It makes me wonder just how distorted my right eye was before the operation, as it was far worse than my left eye is at present.

My next check up isn't for another 5 weeks-by then it will be 3 months since the operation!

Anyway, hope everyone is doing OK,

Rob.

[Sue Ingram]

Hi Rob, Glad to hear that things are still going well for you (and that you were able to get a haircut!). It will be very interesting to see your photos once you have the completed set (that's if you were thinking of publishing them, of course!).

I have also wondered how people know that they are a high risk of graft rejection if they have not had surgery previously. Perhaps someone can explain this to us.

Its interesting to hear your continued progress so keep it up. Take care. SUE

[SEAN PULLEN]

HI ALL,IVE JUST BEEN DIAGNOSED WITH KC,AFTER IGNORING MY LOSS OF VISION FOR A LONG TIME I FINALLY GOT MY EYES TESTED AND WAS TOLD OF THIS DISEASE THAT I NEVER HEARD OF IN MY LIFE BEFORE,THIS SITE HAS REALLY HELPED AT 28 I DIDNT THINK MY SIGHT COULD DETERIORATE SO FAST AND TO SAY IT IS SCARY IS AN UNDERSTATEMENT,I WOULD LIKE TO ASK YOU GUYS HOWEVER WHATS IT LIKE LIVING WITH THIS DISEASE?AND IS IT A DAILY BATTLE TO ACHEIVE PAINLESS VISION?..THANKS AND GOOD LUCK