Hi Mohammed,
I was diagnosed with Keratoconus when I was 11 and I am now 49 on my way to 50.
You don't necessarily need to assume you'll need a corneal graft. I thought I was going to need one but got referred to a specialist last week who said no way.
My left eye is really bad my right eye is stronger both have KC.
My vision changed at about 35 and at 39 I changed my contact lenses and GAINED enough site that I learnt to drive.
Everyone is different my brother has it and his left eye is his strong one and his right eye is weak.
Look after your health.
I take Vitamins including Lutein
I don't smoke and keep away from smokey atmospheres.
I suppose at 25 you wont want to do that so my advice when you wear contacts and go out at night always clean them properly never shortcut the lens cleaning regime, Rinse your eyes clean with optrex or some such before you go to bed.
Air conditioning is murder it dries your eyes out with lenses so always have some eyedrops handy.
You may find that you are very light sensitive and will find wrap around sunglasses help but then that's a pretty cool look anyway.
KC doesn't need to drastically change your life some of us fare better than others.
I am pretty lucky
I drive
I ride a decent horse and compete regularly (well I did until my last fracture ho ho!)
I work in an IT department
I paint animal portraits
I garden
My brother drives, goes to his local pub every night and ignores the cigarette smoke, works full time, has renovated his house,
rebuilt a Land Rover, been on a dry stone walling course, goes skiing goes hiking,
sails I could go on (he's 18 months younger than me by the way)
Hope this sounds a bit more positive for you.
Quicktopic posts: Feb 2004
Moderators: Anne Klepacz, John Smith, Sweet
-
Anna MASON
Hi Craig,
I spent several years wearing my lenses in alternate eyes overlapping the middle part of the day.
Now I tend to leave my left lens out in the evenings to give that eye a break and put my right lens in as late as possible at weekends occasionally giving it a day off.
I have found that saline drops work well in extending wearing time but you need to put them in when your eyes feel fine.
Another idea that works is taking you lenses out for you lunch break.
I spent several years wearing my lenses in alternate eyes overlapping the middle part of the day.
Now I tend to leave my left lens out in the evenings to give that eye a break and put my right lens in as late as possible at weekends occasionally giving it a day off.
I have found that saline drops work well in extending wearing time but you need to put them in when your eyes feel fine.
Another idea that works is taking you lenses out for you lunch break.
-
rosemary@umbilical.demon.
Sarah said:
I've been wearing gas permeable lenses for 14 years but am now
intolerant and don't like the sound of a transplant.
Hi Sarah!
When you say gas permeable lenses, do you mean the corneal ones? - ones that are about the same size as your iris (the coloured
part of your eye)?
If so, it sounds like it might be a good idea for you to try
with sclerals. These are also gas permeable (ie. they are made
out of the same material) but are larger, so they fit across the white part of your eye and are clear of the sensitive central
area, which may be what's giving you problems. Sclerals don't
work for everyone, but there are several folks on here who have
found them a great help.
Please do tell us what area you live in - someone here might
know a good specialist in your region. Otherwise, you could get your doctor to refer you to Moorfields Eye Hospital (in London), which is home to a well-regarded scleral clinic,
Moorfields, incidentally, do know about intacts, and do not
recommend them for KC. The subject came up a few months ago,
and one of the Moorfields staff wrote an article about it, and
the reasoning behind their decision, which was posted on the KC
Group web site. You may like to have a look around on
http://www.keratoconus-group.org.uk.
Rosemary
--
Rosemary F. Johnson
I've been wearing gas permeable lenses for 14 years but am now
intolerant and don't like the sound of a transplant.
Hi Sarah!
When you say gas permeable lenses, do you mean the corneal ones? - ones that are about the same size as your iris (the coloured
part of your eye)?
If so, it sounds like it might be a good idea for you to try
with sclerals. These are also gas permeable (ie. they are made
out of the same material) but are larger, so they fit across the white part of your eye and are clear of the sensitive central
area, which may be what's giving you problems. Sclerals don't
work for everyone, but there are several folks on here who have
found them a great help.
Please do tell us what area you live in - someone here might
know a good specialist in your region. Otherwise, you could get your doctor to refer you to Moorfields Eye Hospital (in London), which is home to a well-regarded scleral clinic,
Moorfields, incidentally, do know about intacts, and do not
recommend them for KC. The subject came up a few months ago,
and one of the Moorfields staff wrote an article about it, and
the reasoning behind their decision, which was posted on the KC
Group web site. You may like to have a look around on
http://www.keratoconus-group.org.uk.
Rosemary
--
Rosemary F. Johnson
-
Anna MASON
-
Craig
-
Andrew MacLean
You are right that the Scleral, or haptic lens fits over the white of the eye. actually getting it in sounds a lot more scary than the actual doing of it. You jam the lens up under your top eyelid, and pull the lower lid down so that the lens slides under. I do it without a mirror, and the lens goes in comfortably.
Now getting it out again ... there's another story.
Andrew
On 25 Feb 2004, at 14:23, QT - Craig wrote:
>
< replied-to message removed by QT >
Now getting it out again ... there's another story.
Andrew
On 25 Feb 2004, at 14:23, QT - Craig wrote:
>
< replied-to message removed by QT >
-
Dave D
Well here I am again, asking for advice!
Been to my hospital today for a check-up. Basically they don't have a CL clinic so I spoke to the Head nurse (the guy with the purse strings I am told) about funding a new pair of RGP;s I am told that I need.
I was told that the hospital would pay for the first pair, and then I would fund the rest. He said to send in the quote and he wud see wat he cud do.....is there not a much more structured funding method then individual hospitals making decesions on a patient by patient basis?
I know on here people have said about getting lenses from their hospital, at a flat rate cost of £40 odd ish....but what about when the hospital has no CL fitting clinic?
Was also told of a University prof at Glasgow uni who has KC and lectures on it..anyone know him, or indeed do you reside on this list Sir??
Cheers Guys, why do I always leave the hospital feeling more confused and concerned then before!!
Dave.
p.s The lady who replied to me about Sunderland eye infirmary a few weeks back could you please get in touch:
DAVE_UK_NE@YAHOO.CO.UK
Been to my hospital today for a check-up. Basically they don't have a CL clinic so I spoke to the Head nurse (the guy with the purse strings I am told) about funding a new pair of RGP;s I am told that I need.
I was told that the hospital would pay for the first pair, and then I would fund the rest. He said to send in the quote and he wud see wat he cud do.....is there not a much more structured funding method then individual hospitals making decesions on a patient by patient basis?
I know on here people have said about getting lenses from their hospital, at a flat rate cost of £40 odd ish....but what about when the hospital has no CL fitting clinic?
Was also told of a University prof at Glasgow uni who has KC and lectures on it..anyone know him, or indeed do you reside on this list Sir??
Cheers Guys, why do I always leave the hospital feeling more confused and concerned then before!!
Dave.
p.s The lady who replied to me about Sunderland eye infirmary a few weeks back could you please get in touch:
DAVE_UK_NE@YAHOO.CO.UK
-
umbilica@umbilical.demon.
Craig asked how one gets a scleral lens in, and Andrew replied:
You are right that the Scleral, or haptic lens fits over the
white of the eye. actually getting it in sounds a lot more
scary than the actual doing of it. You jam the lens up under
your top eyelid, and pull the lower lid down so that the lens
slides under. I do it without a mirror, and the lens goes in
comfortably.
Tee hee! That's one way of describing it. I might have written "gently slide" rather than "jam", but let's not be pedantic!
It's a well-known phenomenon of the scleral lens world that a
person who first sees a scleral lens has a pink fit and thinks
it will never go in their eye - but once you get the hang of it, it's worth it.
Actually, when I first got mine, I couldn't - the fitting
specialist had to teach my mum how to do it for me before I
could take it home (I was about 14 at the time and very
squeamish).
Andrew again:
Now getting it out again ... there's another story.
Yeah - that's a knack you have to get the hang of, too!
Rosemary
--
Rosemary F. Johnson
You are right that the Scleral, or haptic lens fits over the
white of the eye. actually getting it in sounds a lot more
scary than the actual doing of it. You jam the lens up under
your top eyelid, and pull the lower lid down so that the lens
slides under. I do it without a mirror, and the lens goes in
comfortably.
Tee hee! That's one way of describing it. I might have written "gently slide" rather than "jam", but let's not be pedantic!
It's a well-known phenomenon of the scleral lens world that a
person who first sees a scleral lens has a pink fit and thinks
it will never go in their eye - but once you get the hang of it, it's worth it.
Actually, when I first got mine, I couldn't - the fitting
specialist had to teach my mum how to do it for me before I
could take it home (I was about 14 at the time and very
squeamish).
Andrew again:
Now getting it out again ... there's another story.
Yeah - that's a knack you have to get the hang of, too!
Rosemary
--
Rosemary F. Johnson
-
umbilica@umbilical.demon.
Craig:
Can someone please explain what scleral lenses are. If they fit the whites of your eyes, how on earth do you get them in?! I
struggle enough with my big GP which covers my iris!!
Mine are about the size of a 2p bit, but (obviously) a curved
hollow shape to fit my eyeballs.
Here's how I was taught to get them in:
Standing or sitting upright, keep head up and look sharply
downward (as if inspecting the knot in your tie.
Hold lens between thumb and index finger with the top at the
top, the right way round to be put in.
With the other hand put fingertips on eyelid and gently pull it
up so there's a slight gap between the edge of the lid and the
eye.
Gently slide the top of the lens up into this gap.
Now slide the top eyelid down over the lens. This should hold
the lens in place.
Put the fingers of the hand that were holding the lens just
above the cheekbone and gently pull the lower eyelid down.
Meanwhile raise your eyes to be looking straight ahead and you
should feel the edge of the lower eyelid pop out from under the
lens.
Take hands away, blink a ocuple of times if you see the need.
Gently pat any wet/sticky finger marks (from the solutions) dry
with a clean hankie, tissue or cotton wool.
These days, the lenses are made out of a different material
(RGP, as the corneal lenses are made of) and you fill them up
with saline. So you have to do all the above bending over a
sink/basin/towel on your lap and your face horizontal pointing
downwards.
It's a knack you have to get used to, and it isn't as horrendous as it sounds once you get used to it.
Rosemary
--
Rosemary F. Johnson
Can someone please explain what scleral lenses are. If they fit the whites of your eyes, how on earth do you get them in?! I
struggle enough with my big GP which covers my iris!!
Mine are about the size of a 2p bit, but (obviously) a curved
hollow shape to fit my eyeballs.
Here's how I was taught to get them in:
Standing or sitting upright, keep head up and look sharply
downward (as if inspecting the knot in your tie.
Hold lens between thumb and index finger with the top at the
top, the right way round to be put in.
With the other hand put fingertips on eyelid and gently pull it
up so there's a slight gap between the edge of the lid and the
eye.
Gently slide the top of the lens up into this gap.
Now slide the top eyelid down over the lens. This should hold
the lens in place.
Put the fingers of the hand that were holding the lens just
above the cheekbone and gently pull the lower eyelid down.
Meanwhile raise your eyes to be looking straight ahead and you
should feel the edge of the lower eyelid pop out from under the
lens.
Take hands away, blink a ocuple of times if you see the need.
Gently pat any wet/sticky finger marks (from the solutions) dry
with a clean hankie, tissue or cotton wool.
These days, the lenses are made out of a different material
(RGP, as the corneal lenses are made of) and you fill them up
with saline. So you have to do all the above bending over a
sink/basin/towel on your lap and your face horizontal pointing
downwards.
It's a knack you have to get used to, and it isn't as horrendous as it sounds once you get used to it.
Rosemary
--
Rosemary F. Johnson
-
Anna MASON
Rosemary,
Hi (I'm the horsey one),
Do you have a feel for how vision with sclerals compares to other lenses ? I was told I wouldn't get the same vision as with softperm but in the consulting room when doing tests I thought it was better?
Quote of the week.
I had lunch with a work colleague and discussed my visit to the eye hospital.
Unfortunately I mentioned the howmany fingers am I holding up test when I had no lenses in.
When I told her I could only guess and then only if they waggled their hand around she said
'OH MY GOD WHY AREN'T YOU REGISTERED BLIND!'
Luckily I was on a high as I have been told I don't need surgery so I didn't do my impression of Miss Piggy and plant her one.
Hi (I'm the horsey one),
Do you have a feel for how vision with sclerals compares to other lenses ? I was told I wouldn't get the same vision as with softperm but in the consulting room when doing tests I thought it was better?
Quote of the week.
I had lunch with a work colleague and discussed my visit to the eye hospital.
Unfortunately I mentioned the howmany fingers am I holding up test when I had no lenses in.
When I told her I could only guess and then only if they waggled their hand around she said
'OH MY GOD WHY AREN'T YOU REGISTERED BLIND!'
Luckily I was on a high as I have been told I don't need surgery so I didn't do my impression of Miss Piggy and plant her one.
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