David asked about costs of lenses:
"about 42 pounds" sounds about right. But the difference may be not which hospital you go to, but whether you have to pay or
not. Some people don't have to pay - like some people don't
have to pay prescription charges. The exemptions I think are on similar lines - those on certain types of benefits or over a
certain age, etc, but you'd need to get the official info sheet
for the precise details.
Good luck with your meeting with Mr Milburn.
Rosemary
--
Rosemary F. Johnson
Quicktopic posts: Mar 2004
Moderators: Anne Klepacz, John Smith, Sweet
-
umbilica@umbilical.demon.
Pete said:
I was advised by the specialist I was seeing in Cambridge to wear the soft lenses as my eyes are quite sensitive and he
felt that i would not be comfortable with the harder lenses.
Unfortunately, this is a cleft stick situation. Yes, it's true
that (generally... allegedly...) soft lenses are more
comfortable to wear. But, beyond a certain point, they don't do the job properly for people with KC. That is, they mould their
soft selves onto the distorted shape of a KC eye and don't
provide the necessary "false front" to correct the vision -
possible, moulding themselves onto a changing distorted shape as you move about, etc.
So people with KC have to go on to the hard lenses, and grapple
with issues like comfort.
If your eyes are very sensitive and comfort/wearing time is a
problem, you might find scleral lenses a better option than the
smaller, corneal lenses. The corneal lenses are about the size
of the iris; the scleral lenses are larger and fit right across
the whites of the eyes and under the eyelids - which isn't as
horrendous as it might sound once you've got used to them!
Scleral lenses can be more comfortable as they fit clear of the
more sensitive central areas of the eye. These days, both are
made of RGP - rigid gas permeable - plastic.
Some people in this group have also had good results from
"hybrid" lenses that are part-hard and part-soft - I hope some of them will fill in more details.
Good luck with your appointment at Moorfields. You'll certainly be in a good place to see people about various types of contact
lens, so I hope they can get you sorted out OK.
Rosemary
--
Rosemary F. Johnson
I was advised by the specialist I was seeing in Cambridge to wear the soft lenses as my eyes are quite sensitive and he
felt that i would not be comfortable with the harder lenses.
Unfortunately, this is a cleft stick situation. Yes, it's true
that (generally... allegedly...) soft lenses are more
comfortable to wear. But, beyond a certain point, they don't do the job properly for people with KC. That is, they mould their
soft selves onto the distorted shape of a KC eye and don't
provide the necessary "false front" to correct the vision -
possible, moulding themselves onto a changing distorted shape as you move about, etc.
So people with KC have to go on to the hard lenses, and grapple
with issues like comfort.
If your eyes are very sensitive and comfort/wearing time is a
problem, you might find scleral lenses a better option than the
smaller, corneal lenses. The corneal lenses are about the size
of the iris; the scleral lenses are larger and fit right across
the whites of the eyes and under the eyelids - which isn't as
horrendous as it might sound once you've got used to them!
Scleral lenses can be more comfortable as they fit clear of the
more sensitive central areas of the eye. These days, both are
made of RGP - rigid gas permeable - plastic.
Some people in this group have also had good results from
"hybrid" lenses that are part-hard and part-soft - I hope some of them will fill in more details.
Good luck with your appointment at Moorfields. You'll certainly be in a good place to see people about various types of contact
lens, so I hope they can get you sorted out OK.
Rosemary
--
Rosemary F. Johnson
-
Isha
-
Anna Mason
-
Anna Mason
I currently wear the hybrid type they are Softperm and have had them for 10 years.
I have to be very cautious about wearing time mostly because they are so comfortable it is easy to overwear and I only notice when I take them out and all hell breaks loose.
Pros Very Comfortable, Excellent Vision , Dust doesn't get under them Cons tricky to put in,Easy to damage the weld between the soft and hard splits, Not very Gas permeable.
The trick is to know this and manage it I use Gallons of saline eye drops to keep them from drying out on my eye, Don't ever let them dry out and Manage your wearing time as you don't realise you have a problem until its too late!
I have to be very cautious about wearing time mostly because they are so comfortable it is easy to overwear and I only notice when I take them out and all hell breaks loose.
Pros Very Comfortable, Excellent Vision , Dust doesn't get under them Cons tricky to put in,Easy to damage the weld between the soft and hard splits, Not very Gas permeable.
The trick is to know this and manage it I use Gallons of saline eye drops to keep them from drying out on my eye, Don't ever let them dry out and Manage your wearing time as you don't realise you have a problem until its too late!
-
Anna MASON
Hi Isha. Don't be scared there is a lot more scary than this I assure you. I was diagnosed at 12 and it hasn't stopped me in the last 30 years or so. Like all problems some have it worse than others.
Bear in mind that a site like this has the extremes on it.
Why don't you give us some background about who and how you were diagnosed?
Bear in mind that a site like this has the extremes on it.
Why don't you give us some background about who and how you were diagnosed?
-
Andrew MacLean
Hello Isha
I'm Andrew, and I'm 54. I was scard when they told me I had
Keratoconus, but now that I have lived with the condition for more than half my lifetime, it isn't so scary.
If the time comes when you can't see well enough with just glasses, they will probably suggest that you wear contact lenses. There are lots of different sorts of contact lenses, and you can read about them all on the internet. for most of the time I have lived with
keratoconus, I wore Rigid Gas Permeable Corneal lenses. I found them very easy to put in and take out, and they gave me very good eyesight.
When the time came that I couldn't wear them any more, they gave me a "scleral" lens for my left eye. This is bigger, and it is more
comfortable to wear, but not as easy to put in and take out. For my right eye, a surgeon took away the cornea (like a little window at the front of my eye) and gave me a new one that had been donated.
I was worried about the surgery, but I didn't really need to worry. Everything went very well and the new cornea is becoming part of my eye.
I know it is a bit overwhelming when you are first told that you have something wrong with your eyes, but I have found that if there is something in particular that worries me, I can ask the nice people here and they have always been able to give me good information or advice.
All the best.
Andrew MacLean
On 3 Mar 2004, at 22:33, QT - Isha wrote:
>
< replied-to message removed by QT >
I'm Andrew, and I'm 54. I was scard when they told me I had
Keratoconus, but now that I have lived with the condition for more than half my lifetime, it isn't so scary.
If the time comes when you can't see well enough with just glasses, they will probably suggest that you wear contact lenses. There are lots of different sorts of contact lenses, and you can read about them all on the internet. for most of the time I have lived with
keratoconus, I wore Rigid Gas Permeable Corneal lenses. I found them very easy to put in and take out, and they gave me very good eyesight.
When the time came that I couldn't wear them any more, they gave me a "scleral" lens for my left eye. This is bigger, and it is more
comfortable to wear, but not as easy to put in and take out. For my right eye, a surgeon took away the cornea (like a little window at the front of my eye) and gave me a new one that had been donated.
I was worried about the surgery, but I didn't really need to worry. Everything went very well and the new cornea is becoming part of my eye.
I know it is a bit overwhelming when you are first told that you have something wrong with your eyes, but I have found that if there is something in particular that worries me, I can ask the nice people here and they have always been able to give me good information or advice.
All the best.
Andrew MacLean
On 3 Mar 2004, at 22:33, QT - Isha wrote:
>
< replied-to message removed by QT >
-
mgc
-
Dave D
Hi Folks,
well my meeting with Alan Milburn was time well spent. He is going to look into the funding differences for KC patients across teh country and get bcak to me whilst I have hopefully been sent to Sunderland eye infirmary to manage my KC in teh future as I was not happy with my local hospital.
Still has a few 'contacts' with the health service I guess?? Although he has done me no personal favours but gave plenty of sound advice!
Dave D.
well my meeting with Alan Milburn was time well spent. He is going to look into the funding differences for KC patients across teh country and get bcak to me whilst I have hopefully been sent to Sunderland eye infirmary to manage my KC in teh future as I was not happy with my local hospital.
Still has a few 'contacts' with the health service I guess?? Although he has done me no personal favours but gave plenty of sound advice!
Dave D.
-
BORG
>
> Hi Folks,
>
> well my meeting with Alan Milburn was time well spent. He is
> going to look into the funding differences for KC patients
> across teh country and get bcak to me whilst I have hopefully
> been sent to Sunderland eye infirmary to manage my KC in teh
> future as I was not happy with my local hospital.
>
> Still has a few 'contacts' with the health service I guess??
> Although he has done me no personal favours but gave plenty of
> sound advice!
>
> Dave D.
I hope he doesn\t stop us getting them free or put the prices up
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.605 / Virus Database: 385 - Release Date: 01/03/2004
> Hi Folks,
>
> well my meeting with Alan Milburn was time well spent. He is
> going to look into the funding differences for KC patients
> across teh country and get bcak to me whilst I have hopefully
> been sent to Sunderland eye infirmary to manage my KC in teh
> future as I was not happy with my local hospital.
>
> Still has a few 'contacts' with the health service I guess??
> Although he has done me no personal favours but gave plenty of
> sound advice!
>
> Dave D.
I hope he doesn\t stop us getting them free or put the prices up
---
Outgoing mail is certified Virus Free.
Checked by AVG anti-virus system (http://www.grisoft.com).
Version: 6.0.605 / Virus Database: 385 - Release Date: 01/03/2004
Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 27 guests