Quicktopic posts: Mar 2003

[mike summers]

Hi Dave
Nine years ago I received lenses for £40 each with free replacements in first year.
This week I saw consultant and was considered in the "best" 10% of KC sufferers and yesterday I received appointment for contact lens fitting in a fortnight.
Hopefully they will still be cheaper than via opticians.
I approached my GP to be referred after taking advice from optician.
After trying lenses nine years ago I got out of the habit, now I find I am struggling to cope with glasses alone, so I have got myself back into the system.
Will let you know how I got on at contact lens clinic.
mike

[kate]

Ui everyone - and especially Harpo
I have now had my hydrops for 16 weeks and I admit to having been very depressed at times. I am finding work hard going and quite frustrating! I have been relying on my left, almost no vision eye, and was plunged into despair last week when it suddenly became intolerant of my scleral - woe betide any child who annyed me at school! Like Harpo I also have scarring on my right eye, but as yet there is still some water present, so no decisions are being made, although a graft seems inevitable.

I am determined to get something positive out of this experience (I am in positive mood today!) Firstly iu am pursuing the Access to Work route to make work easier - has anyone any experience of this? Secondly, and more importantly, I am determined yo make Kent County Council live up to the logo it proudly displays - the 2 ticks"Positive abpout disabled people". I regularly request enlarged course notes, copies of powerpoint presentations etc when attending courses, but as yet these have failed to apperar! Consequently I am now writing to the powers that be (using a very large font size!) rncloding copies of application forms etc to prove that I have given them notice of my needs - wonder if they will take any notice!

[gemstone@umbilical.demon.]

Harpo said:
Monday 25 November 2002 - Thursday 27 Feburary 2003
13 Weeks)

Thats how long my hydrops have taken up to clear, and to date
was the worst time in my life.

Hallo Harpo! - I was just thinking a couple of days ago we
hadn't heard from you for ages and wondering how you were
getting on.

I'm glad the hydrops has cleared at last. 13 weeks! - that's the longest I've heard of, and far longer than any of mine. So, yes it is good news and good progress.... so far!

Because my vision came back to a state where i can see around me but things are faded, white fog. I believed that it was due to
there still being water trapped behind my cornea because if you look at my right eye there is still a white patch in the middle. I had assumed it was water and that it needed time to clear and that when it did that I would see without the fade.

I had that - foggy vision - after at least two of my hydropses
for a few months. And there's still a small patch of white
visible in my left eye if one looks closely. They decided in
the end it wasn't bad enough to need a graft, and I can still
see well enough to cope - just about - without a graft though it certainly took a while to get used to it.

I went to my appointment yesterday morning. I thought he would
be impressed at the progress. I totally didn't think he was
going to say something bad. He said the white patch was not
water and that the hydrops had cleared. The white patch was
scarring. I was totally taken back I can't believe it scarred so bad.

Ouch!! How worrying! The last thing you wanted to hear.

It sounds like you had a very big, nasty split, given the
hydrops took so long to clear, so I suppose that is the sort
that would be more likely to leave big scars. I was warned when I had my first hydrops that a graft may become necessary,
depending how well the eye healed and how much scarring there
was. I remember dreading having to be grafted, so I do
understand how much you do too.

I have 12 weeks till my next appointment to decide if I go ahead with the graft and they will try to get it done for July time.

Don't know what to do. I start my 3rd and final year at uni in
october so I would need to have it done before that.

Hang in there! It may yet settle down some more so you can cope with living with it and can delay the graft. Then it will be a
case of which bothers you more: the risk of the operation or the inconvenience of living in a haze. Meanwhile, please do find
someone at uni - student welfare officer, or whoever, and your
tutor - to talk to about how best to handle your course, what
help there may be and what support you could get if things do go wrong.

I'm a high rejection candidate too so I know this whole thing
will go wrong.

Eek. That's really worrying...

Worried about my driving since I've had a few lessons now (12)
and am convinced things are all gonna get screwed up.

Please, please, don't do any driving if it might be dangerous!
I hope it does all work out, but, honestly, there are worse
things than not being able to drive (even when one lives on the
non-functioning Central Line as I do!!!) - one of the "worse
things" would b having a nasty accident.

Things don't seem to want to go right for me so don't have much hope in anything right now.

Oh, gee, I know that feeling all too well! I've had times of my life when I've felt life does nothing but keep kicking me in the teeth. Please, hang in there and don't let it get you down.

Rosemary
--
Rosemary F. Johnson

[Anthony Facer]

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.Has anybody had any similar experiences?

[Amanda Stigle]

Your local association for the blind or RNIB should be able to advise you. I have also had long term sickness problems due to KC, you can contact me on astigle@aol.com

[Sue Ingram]

Hi Anthony, I also suffer with rashes and itchy skin and have always wondered whether there is a connection with KC - who knows!
Due to the fact that you obviously cannot wear lenses, nor glasses for any length of time, to correct your vision and this is now affecting your whole life, has a corneal transplant been considered? I do believe that if KC can be managed with contact lenses then so much the better, however, it sounds like you have come to the end of the road, in which case the surgical option could well be the answer for you. There are many things that need to be discussed before you go ahead with a corneal transplant and you would have to weigh up all the pros and cons but it might be worth looking into.
I was also thinking of suggesting scleral lenses (as an alternative to surgery). Have you tried these before? They cover your whole eye and therefore, the edge of the lenses do not irritate the inside of your eyelids. However, you would have to find out if these are an option for you with the blistering you are getting under your eyelids.
I have not had a corneal transplant but I know there are many people who visit the site who have had one and I am sure they will be able to answer any questions you may have. However, I do wear scleral lenses, after having worn rgp corneals for 20-odd years, so if you want any info on sclerals, then you can always email me direct on sue.ingram@virgin.net
I do hope things start look up for you. Good luck and let us know how you get on. Take care. SUE

[Anthony Facer]

hi sue
thanks for message.I have tried scleral lens many years ago but found visually not very good do you find it the same?would be very scared of graft as a major coward !!and more importantly do have reactions to things so think i would probably have trouble and maybe reject them,
Its interestingto know that you and perhaps others have rashes etc,if only a link could be established perhaps some of our problems could be cured.do keep in touch either on here or facerantman@aol.com

[Anthony Facer]

hi astigle@aol.com
thanks for message sorry to hear youve had health problems would be intersted to hear more will contact you soon or maybe you would like to contact me direct facerantman@aol.com

[Sue Ingram]

Hi Anthony, I also found that scleral lenses do not bring my vision up enough so I now have a pair of glasses that I wear with my sclerals and can see perfectly! I now have the comfort of sclerals together with good vision. Then, I just leave my glasses off when I don't need them. So, this may be something for you to look into if you were able to wear sclerals but found the vision not good enough. Take care. SUE

[rosemary@umbilical.demon.]

Kate wrote:
Ui everyone - and especially Harpo
I have now had my hydrops for 16 weeks and I admit to having
been very depressed at times. I am finding work hard going and quite frustrating! I have been relying on my left, almost no
vision eye, and was plunged into despair last week when it
suddenly became intolerant of my scleral - woe betide any child who annyed me at school!

Hi Kate! Good to hear from you. 16 weeks! - oh my. I'm not
surprised you get depressed and frustrated.

Like Harpo I also have scarring on my
right eye, but as yet there is still some water present, so no decisions are being made, although a graft seems inevitable.

Good luck..... I'll be hoping for the best for you.

I am determined to get something positive out of this experience (I am in positive mood today!) Firstly iu am pursuing the Access to Work route to make work easier - has anyone any experience of this?

I've tried to but without much luck so far. One of the problems with AtW has been that it would pay for specialist equipment,
but had inadequate provision for providing training in how to
use it. So one could have ended up with a deskload of special
kit and not know what to do with it! I'm told this is changing
for the better now, and good thing too. I suggest you keep tabs on this and insist that you get some proper training to get the
best out of anything it gets you.

Secondly, and more importantly, I am determined yo make
Kent County Council live up to the logo it proudly displays -
the 2 ticks"Positive abpout disabled people". I regularly
request enlarged course notes, copies of powerpoint
presentations etc when attending courses, but as yet these have failed to apperar! Consequently I am now writing to the powers that be (using a very large font size!) rncloding copies of
application forms etc to prove that I have given them notice of my needs - wonder if they will take any notice!

Strength to your elbow! - I hope you get your enlarged notes.
There are altogether too many organisations which display the
"two ticks" and don't stick to the rules. Did you also know
you're entitled to an annual review about your special needs and how well they are being addressed? - and *all* the staff are
supposed to get disability awareness training?

Rosemary

--
Rosemary F. Johnson