Quicktopic posts: Mar 2003

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

Deborah Payne

Postby Deborah Payne » Wed 12 Mar 2003 7:27 pm

My daughter was diagnosed at the age of 4 with KC which was a bit of a shock. She was 12 years old this week and she has tried all sorts of lenses but she couldn't see with the soft ones and couldn't tolerate the pain of the hard lenses - we went through a period where her vision was 6/12 at best which isn't good at 11 years old.

My daughter was initially diagnosed with KC in one eye but she now has got it in both eyes.

Eventually her eyes settled again and she has now got good vision from glasses. Her optician was so delighted that he gave her designer frames for the price of NHS ones.

I found out only a few weeks ago that every Education Authority have teachers twho look after pupils with sight impairment, they see the parents in their home and gain info on how they can help their child then they go to see the pupil at their school, then they advise the school on how to best help the pupil. In our case the unit were horrified that she hadn't been referred by her primary school.

The advisors will make sure that Katherine's school will privide the best facilities for her and they will review her needs every term.

At primary school Katherine sat at the back of the classroom because she was bright and as she
wore glasses they assumed her vision was corrected and they were more concerned about the children who didn't wear glasses !

Katherine's older brother got a place at grammar school (he has perfect vision) Katherine is as bright if not brighter but she didn't get a place because the font on the multiple question page was too small for her to see clearly, if we had known about the unit earlier they could have helped. Saying that she is happy at the school she and is very musical playing the Saxopone, flute, clarinet, cello and piano which she couldn't have done at grammar school as the children are limited to one instrument.

Katherine's primary HT and optician were very upset and both appealed against the decision for Katherine to go to the same school as her brother. The grammar school in question don't like to have children with special needs so at he end of the day we had no chance.

Karen Bashford

Postby Karen Bashford » Thu 13 Mar 2003 7:54 am

Thank you Sue for your helpful comments. Yes I have RGP lenses. I have had KC since age of 18 and now nearly 33. I have had a new lens nearly every 4 months for the past year or so. I had lazer op on right eye last March for scarring on cornea. I will look into Scleral lenses and will mention them next time I go to Moorfields in May. I am very happy with the service I get from there.

Andrew Bosanquet

Postby Andrew Bosanquet » Thu 13 Mar 2003 11:28 am

Hi,I am new to the list but not new to KC.

I first wore scleral lenses (from Morfields) in 1962 at age 10-12 at boarding school - not nice. Abandoned them in favour of sitting at the front of class and squinted for the next 10 years. Then got corneal lenses - what a revolution! Wore the same pair for 10 years. Now after 40 years I and my eyes are getting very tired of lenses. I go to Bristol Eye Hospital and, because my left eye does not seem to tollerate a hard lens any more, am getting my first soft lens fitted but it does not look as though it will give good enough vision to drive with.

My right lens is also often uncomfortable. Last week I wore no lenses to give it a rest, my wife drove me into work and I sat 6 inches from my terminal. But even that did not seem to be enough rest. Today I have had to take my lens out again and will just put it in to drive home. This is the first time in the last 30 years that I have longed to be able to put some glasses on!

My questions are:
Has anyone moved from corneal lenses and really tired eyes to scleral lenses and less tiredness? Having hated scleral lenses 40 years ago, I do not relish going back to them.

Does anyone know why lenses become intolerable if the fit is good? I assume it is something to do with not enough oxygen to the cornea. Surely scleral lenses will make this worse?

Andrew
Bath,UK

Carole

Postby Carole » Thu 13 Mar 2003 1:04 pm

Andrew B and Andrew C

I wore rgp corneal lenses for years. Had corneal graft to left eye in 1992. Didn't wear any lens over it for more than 2 years and my right eye coped really well. I didn't have great vision out of the grafted eye but when I eventually got a lens it was a whole new world! At this stage I wore a 8mm boston hard lens and managed on and off with it for 8 years. Eventually I began to hate it due to intolerance, red watery eyes and many visits to eye casualties with ? rejection episodes. The transplant never did reject but I'd generally be treated with a course of steroid eye drops for a week or so. Eventually was referred to another surgeon who suggested re-doing the transplant in the hope of a better shaped eyeball and better naked vision. At this stage of my life I was unaware of this group. Don't know why the thought to do a google search never entered my nor my husband's mind and I'm a ex-nurse and computer literate!! Big lesson to be learned from that but I did feel pretty alone in the world!

I went for the second graft in Dec 2000 feeling very guilty at "getting rid" of a perfectly healthy 8 year old one. The op was uncomplicated but the naked vision awful, infact much worse than with the other graft. As a result I am now wearing scleral lenses very successfully and living a relatively normal life. I can still wear my rgp corneal lens on my right eye but it's not very comfortable these days! I wish I'd had the foresight to fully investigate all options prior to putting myself and my family through surgery again. I am very annoyed that my surgeon didn't even mention sclerals to me. When I found out about this site and sclerals my surgeon said "you're not a candidate for them and besides I don't think you'd get on with them". I was supposed to see him a year ago after his optometrist had a go at fitting my new left eye. I know he knows I'm wearing sclerals and perhaps that is why I've never received an appointment to see him again!

My message to Andrew C is to explore all options before surgery. Remember surgeons love performing grafts. You become a statistic as to post-op results etc. The more they do, the better their technique. Sorry to be cynical as any eye surgeon is a truely talented and clever individual.

Andrew B - Sclerals now come in variable gas permeable materials. My eyes look great now - the whites are white rather than red and bloodshot looking as with the corneals. Plus they don't fall out! The only time I encounter problems is if I don't get enough sleep and then they bother me a bit.

Good luck to you both!

gemstone@umbilical.demon.

Postby gemstone@umbilical.demon. » Thu 13 Mar 2003 8:06 pm

Andrew hated scleral lenses 40 years ago:

I first got sclerals in the mid 70s - not quite as long ago as
you did, but definitely rather back in the "old days".

They make them these days of gas permeable material which is a
different kettle of fish from the ones I started with - and I
can't imagine the really old days when they were made of glass! I guess you, like me, started with ones made of Perspex (known
in the trade jargon as PMMA) and maybe had drainage holes in
them.

The GP ones don't have holes, nor slots or other air-vent/tear
draining devices to catch in the eyelids, or otherwise get
filled up with mucous. The idea is that the air can permeate in to the corneas through the gas-permeable structure of the
material so these are unnecessary. The material is - at a
microscopic level - of a different texture and the fitting is a
bit different, and also you have to clean them between each time you wear them, or the wetting solution doesn't wet (you can
still do that with fairy liquid, if that's what you did before -
and if like me you were told you had to soak them overnight in
Contactosol, don't bother!)

So they're more of a fiddle and you can't stick them in on
the train like you could with the old Perspex ones if you don't
have clean water for the cleaning. *BUT* I do find them more
confortable to wear than the old PMMA and can normally keep the
GP scleral in for longer than the PMMA.

So, it might be worth trying sclerals again and seeing if you
get on with them better than you used to do in the old days.

Good luck!

Rosemary
--
Rosemary F. Johnson

Sue Ingram

Postby Sue Ingram » Fri 14 Mar 2003 7:29 am

Dear Andrew (1474), Welcome to the site. Yes, I understand perfectly about having very sore, tired, gritty eyes from wearing rgp corneals; I had worn them for over 20 years all day and every day and I think my eyes just decided that enough was enough. Unfortunately, a side effect of KC is that we tend to overwear our lenses - as you know, if we don't, life just stops! I just wonder whether our eyes become intolerant of lenses after so many years of constant wear.

I went through a bad year of experiencing terrible pain and soreness in my left eye which stopped me wearing the lens - I could not cope due to the fact that this was my 'good' eye and I could not just take the lens out and carry on. During that time, the hospital tried their best to get a lens that was comfortable and each time a different fit was tried, I hoped this would be the one, but to no avail.

It was then suggested that I tried sclerals (my worst nightmare about to come true ....). However, after getting over the initial shock, I find them brilliant and sooooo much more comfortable than corneals - why didn't someone suggest them to me years' ago? I also found that after being able to give my eyes a 'rest' with the sclerals, I was able to go back to wearing my corneals.

I think every KC sufferer should have a pair of both, so at least then we can give our eyes a rest - something that 'normal' lens wearers cannot understand and keep asking 'why don't you just take your lenses out and put your glasses on?'

As Rosemary says, scleral lenses are now gas permeable so this makes a different with the oxygen. I have my eyes checked every six months to ensure that they are OK with the sclerals and after 3.5 years there have been no problems so far due to lack of oxygen. I believe there are also people out there who have worn sclerals for over 30 years and are still doing so!

Sometimes, the vision with sclerals is not quite as good with corneals. This happened in my case. However, I now have a pair of glasses that I wear with my sclerals and this brings my vision up brilliantly. And ... I can swim, go out in the wind and dust, pretty much do anything I want to, knowing that the sclerals won't fall out or get grit behind them!

I would definitely agree with Rosemary and say sclerals are worth another try; they may mean you can go back to wearing your corneals by swapping lenses every now and again; they may even keep you off the operating table.

Hope you try them. Good luck and keep us posted of your progress. Take care. SUE

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Sat 15 Mar 2003 2:11 pm

Sue said:
Sometimes, the vision with sclerals is not quite as good with
corneals. This happened in my case. However, I now have a pair of glasses that I wear with my sclerals and this brings my
vision up brilliantly.

I've kept meaning to ask this... and sorry if it is a silly
quesiton, but: Sue, if you can get good vision by wearing
glasses with the lenses, why can't the hospital just change the
power of the lenses? Have they tried this and it doesn't work,
or have they not tried?

Rosemary

--
Rosemary F. Johnson

harpomatrix@yahoo.co.uk

Postby harpomatrix@yahoo.co.uk » Sat 15 Mar 2003 2:59 pm

Hi

Who from here is going to that KC conference in june. I'm thinking I might go.

Dhiren

Postby Dhiren » Sat 15 Mar 2003 3:12 pm

Hi my name is Dhiren, i am a KC sufferer and also a final year optometry student at Aston University. I am currently doing my dissertation titled:
"Quality of life in keratoconus patients compared to contact lens patients"

I am looking at how the disease affects lifestyle, education, sports, recreation in all keratoconus patients. It is an area which has not really been looked into before, so it is ground breaking stuff!
I am looking for fellow sufferers to complete the attached questionnaire which is very quick and simple comprising of only 17 questions. It takes approximately 3minutes to complete and gives you the possibility to be involved in ground breaking research. Any one who has Keratoconus can take part, no matter if you have had both eyes grafted or wear contact lenses, i would like you to be involved.
I would be very grateful if everyone could reply, its so quick and easy!

This is not connected to the current research which is being done by the KC group. I would advise everyone to participate in the KC groups research project, it is a postal survey. It is a detailed study into all aspects of keratoconus, the results will be very very interesting and will be useful for the future, exciting stuff! I cant wait to see the outcome of that!

Please help us all and take part in both studies!
Email me at d_nakrani@hotmail.com to take part! Just say YES and i will forward a copy to you!
Thank You, Dhiren!

umbilica@umbilical.demon.

Postby umbilica@umbilical.demon. » Sun 16 Mar 2003 3:21 pm

Harpo is thinking of going to the KC conference in June:

I'm intending to go - so long as there aren't going to be people taking flash photos. I can't go anywhere there will be flashes
and was pretty shoced to be standing there in the lounge with my cup of coffee at the last one and have flash bulbs start popping - I would have thought a KC group event would be one place where one was safe from this!!!!

Rosemary

--
Rosemary F. Johnson


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