Hi everyone, I'm back! A belated Happy New Year to you all. I have been reading all your emails avidly. Wow! There have been tons lately. It's excellent.
Tim C from Woking - Just wondered exactly where you live as I live in Woking too and have never met anyone else locally who has KC. I am in Knaphill.
Kate Love - Thanks for the concern. I had a wonderful holiday in Florida. Came back really destressed but the reason I have not added anything to the discussion page for a while is that my mum had a mild heart attack (she's fine) five days after my return to the UK so it has been pretty hectic since then. I have been reading the messages but not had time to reply to any of them. It's good to take a backseat sometimes, though, and let others relay their experiences. Take care one and all. SUE
Quicktopic posts: Feb 2002
Moderators: Anne Klepacz, John Smith, Sweet
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Jumbo
I have had keratoconus for about 40 years, since the age of 18. I started with what were then called haptic lenses, similar in appearence to the ones I have now.During those 40 years I have had 3 grafts, micro lenses, soft perm, and back to large lenses fitted by the wonderfull Ken.I have no problems at the moment ( touch wood). I would be happy to talk to anyone who wants a moan or a chat about anything regarding KC
Regarding Gareth's point. My first graft was in 1972 and although the graft was very clear and the unaided vision OK it was such an uneven shape that micro lenses would often pop out. The vision on this eye with lenses was very good.The second graft was apparently much more even although the vision with lenses of any kind has never been as good. when I became the patient of the local hospital I was fitted with soft perm lenses which apparently although wonderfull for me were infact damaging the graft. I was also given an operation in which the graft on my second eye was cut and restitched, I now suspect that this was a experimental proceedure which could have gone wrong. Although there was no improvement at least my vision is no worse. I would also be interested to know how good most peoples unaided vision is after the operation as my unaided vision is not good enough to see anything on a normal eye chart.
Are ther any other folks in my area with KC?I am base in Colchester where I run a B&B with my long suffering wife. my E-Mail is dave@pescarahouse.co.uk.
David
Regarding Gareth's point. My first graft was in 1972 and although the graft was very clear and the unaided vision OK it was such an uneven shape that micro lenses would often pop out. The vision on this eye with lenses was very good.The second graft was apparently much more even although the vision with lenses of any kind has never been as good. when I became the patient of the local hospital I was fitted with soft perm lenses which apparently although wonderfull for me were infact damaging the graft. I was also given an operation in which the graft on my second eye was cut and restitched, I now suspect that this was a experimental proceedure which could have gone wrong. Although there was no improvement at least my vision is no worse. I would also be interested to know how good most peoples unaided vision is after the operation as my unaided vision is not good enough to see anything on a normal eye chart.
Are ther any other folks in my area with KC?I am base in Colchester where I run a B&B with my long suffering wife. my E-Mail is dave@pescarahouse.co.uk.
David
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Gareth Ashman
Hi everyone,
I am delighted to hear that there are KC sufferers amongst our number out there who have had success with grafts.
That said, some of the mis-information posted on the site frightens me somewhat.
In particular I like the posting from 'Shelly' where she says her consultant said she was a 'typical case for a graft' (err, no such thing actually) and that she would 'definitely need a graft within 12 months'
How does he know how the condition will develop?
Exactly, he doesn't.
What is particularly worrying is that many patients (like Shelly) are being referred for grafts before all other options are explored. I am talking specifically about sceral lenses here, which I find fantastic and have kept me off the operating table for almost ten years so far.
In addition I work for Bike Magazine and have to ride motorcycles almost every day.
As we stand today, one in twenty grafts are going wrong and are of course irreversible. Every year you fend off surgery, they improve the procedure.
Surgeons are notoriously pro-surgery (pretty obvious, but think about it eh?) but believe me, try sclerals first. You have nothing to lose and possibly everything to gain.
You really do have to look after your own interests in life and healthcare is no different.
If anyone would like to e-mail me about how I got mine please feel free- gareth.ashman@emap.com
Take care
I am delighted to hear that there are KC sufferers amongst our number out there who have had success with grafts.
That said, some of the mis-information posted on the site frightens me somewhat.
In particular I like the posting from 'Shelly' where she says her consultant said she was a 'typical case for a graft' (err, no such thing actually) and that she would 'definitely need a graft within 12 months'
How does he know how the condition will develop?
Exactly, he doesn't.
What is particularly worrying is that many patients (like Shelly) are being referred for grafts before all other options are explored. I am talking specifically about sceral lenses here, which I find fantastic and have kept me off the operating table for almost ten years so far.
In addition I work for Bike Magazine and have to ride motorcycles almost every day.
As we stand today, one in twenty grafts are going wrong and are of course irreversible. Every year you fend off surgery, they improve the procedure.
Surgeons are notoriously pro-surgery (pretty obvious, but think about it eh?) but believe me, try sclerals first. You have nothing to lose and possibly everything to gain.
You really do have to look after your own interests in life and healthcare is no different.
If anyone would like to e-mail me about how I got mine please feel free- gareth.ashman@emap.com
Take care
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Sue Ingram
Hear Hear, Gareth! I swap between sclerals and rgp corneals. If it wasn't for the sclerals, I would probably have opted for a graft by now, which I did not really want to do. We definitely need to get more awareness out there for all the different options of managing KC before having to have a graft. Anyone who is having problems should exhaust all possibilities first; even if this means pushing your practitioner into advising you of the various options, or ultimately even changing your practitioner. This website goes a long way to helping with awareness of the options (previously, we had nothing), but somehow we need to do more - especially for those who are not on the Internet yet. Take care. SUE
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Ian - Oxfordshire
I have to agree,
It is true that a cornea graft is a necessity for some but if it is ever suggested as my only remaining option I will want to be sure that nothing else could have been done first... e.g. specialised lenses, sclerals etc...
Sclerals are often not suggested as there are few specialists in the UK but opticians and eye departments can always just pick up the phone and find out more before referral to a surgeon (who may not be aware of all contact lens options). If in doubt contact Moorfields.
It was made very clear at the last KC conference that transplants are not the first line of defence for KC.
Other lenses are also being developed and with break-throughs in medical science we don't know what could be around the corner which may help us live with our condition. If they can make blind people see again by implanting electronic devices near their optic nerve then surely someone can fix an external eye condition...
Regards
Ian
It is true that a cornea graft is a necessity for some but if it is ever suggested as my only remaining option I will want to be sure that nothing else could have been done first... e.g. specialised lenses, sclerals etc...
Sclerals are often not suggested as there are few specialists in the UK but opticians and eye departments can always just pick up the phone and find out more before referral to a surgeon (who may not be aware of all contact lens options). If in doubt contact Moorfields.
It was made very clear at the last KC conference that transplants are not the first line of defence for KC.
Other lenses are also being developed and with break-throughs in medical science we don't know what could be around the corner which may help us live with our condition. If they can make blind people see again by implanting electronic devices near their optic nerve then surely someone can fix an external eye condition...
Regards
Ian
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Jacqueline Cheetham
Just to agree with Gareth, Sue and Ian. a graft is not always the only alternative. I feel that all other means should be tried before a graft is considered. Surgeons always seem to be very keen to perform operations, when thwey are sometimes not required. I have worn sclerals for about 7 years and up until last summer coped very well with them. For some reason I became intolerante of them, getting a mucus build up. So since the summer I have worn RGP's. They are by no means trouble free, I have been sanding and polishing doors and skirting boards this week, the dust has caused my eyes some awful pain. I did manage to get the paint of one of them OK. But just at the moment I can't for some reason 'face' using my sclerals again. Maybe I'll just get some safety glasses, or sit and read while my Dad does the work.
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amit
I have been diagnosed with KC in both eyes since the age of 17. I am 21 now, and had my first graft in aug. I never realised the impact KC would have on my life.
this is the first time I have written a message so I am abit nervouse, but at the same time it is nice to hear that there are people out there that share the same problem. Hello! please talk to me!
this is the first time I have written a message so I am abit nervouse, but at the same time it is nice to hear that there are people out there that share the same problem. Hello! please talk to me!
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Jay
Was anyone aware of this?..It can only be good news I guess
New Treatment Being Developed to Reshape Cornea
To Stabilize or Correct Keratoconus
ISTA Pharmaceuticals is developing Keraform, a proprietary system for the treatment of keratoconus. Keratoconus is a degenerative corneal disease that impairs vision and is characterized by progressive thinning of the cornea and the development of an irregular, cone-like protrusion of the cornea, typically in both eyes. As the disease progresses, vision becomes increasingly distorted. Keratoconus typically has its onset during puberty or early adulthood, and usually progresses over a 10 to 20 year period. The rate of progression and severity can vary among patients, ranging from mild astigmatism to severe loss of vision. Eyeglasses do not help the vision of these patients as the severity of keratoconus increases. Most patients choose to wear hard contacts lenses with limited long term effectiveness. Currently, the only permanent treatment for keratoconus is a corneal transplant. Due to the lack of permanent, nonsurgical methods to treat keratoconus, we believe that Keraform, if successfully developed, will be an attractive option to treat keratoconus. We believe Keraform, a nonsurgical system, can reshape a patient's cornea to stabilize, improve or correct keratoconus. Treatment with Keraform involves three steps:
- Step One. In order to make the cornea more malleable, a proprietary
formulation of hyaluronidase is injected into the stroma, the middle layer
of the cornea. The hyaluronidase digests the proteoglycans that bind the
collagen together in the stroma, making the cornea soft and malleable.
- Step Two. A custom fitted, hard contact lens is temporarily worn by the patient to reshape the cornea.
- Step Three. Topical stabilizing drops containing glycerose are used to
set the cornea to maintain the proper shape once optimal vision correction is achieved. Glycerose, a naturally occurring chemical found in the body, when used in the eye crosslinks the collagen to make the cornea more rigid.
ISTA Pharmaceuticals plans to conduct a pilot Phase IIa clinical trial of Keraform for the treatment of keratoconus, with the trial consisting of four study arms and a total of 24 patients. The primary study objective is to safely and effectively reshape and stabilize the corneas of keratoconus patients. Patients enrolled in the trial will receive either a hyaluronidase or a saline injection, and topical glycerose or saline stabilizing drops.
New Treatment Being Developed to Reshape Cornea
To Stabilize or Correct Keratoconus
ISTA Pharmaceuticals is developing Keraform, a proprietary system for the treatment of keratoconus. Keratoconus is a degenerative corneal disease that impairs vision and is characterized by progressive thinning of the cornea and the development of an irregular, cone-like protrusion of the cornea, typically in both eyes. As the disease progresses, vision becomes increasingly distorted. Keratoconus typically has its onset during puberty or early adulthood, and usually progresses over a 10 to 20 year period. The rate of progression and severity can vary among patients, ranging from mild astigmatism to severe loss of vision. Eyeglasses do not help the vision of these patients as the severity of keratoconus increases. Most patients choose to wear hard contacts lenses with limited long term effectiveness. Currently, the only permanent treatment for keratoconus is a corneal transplant. Due to the lack of permanent, nonsurgical methods to treat keratoconus, we believe that Keraform, if successfully developed, will be an attractive option to treat keratoconus. We believe Keraform, a nonsurgical system, can reshape a patient's cornea to stabilize, improve or correct keratoconus. Treatment with Keraform involves three steps:
- Step One. In order to make the cornea more malleable, a proprietary
formulation of hyaluronidase is injected into the stroma, the middle layer
of the cornea. The hyaluronidase digests the proteoglycans that bind the
collagen together in the stroma, making the cornea soft and malleable.
- Step Two. A custom fitted, hard contact lens is temporarily worn by the patient to reshape the cornea.
- Step Three. Topical stabilizing drops containing glycerose are used to
set the cornea to maintain the proper shape once optimal vision correction is achieved. Glycerose, a naturally occurring chemical found in the body, when used in the eye crosslinks the collagen to make the cornea more rigid.
ISTA Pharmaceuticals plans to conduct a pilot Phase IIa clinical trial of Keraform for the treatment of keratoconus, with the trial consisting of four study arms and a total of 24 patients. The primary study objective is to safely and effectively reshape and stabilize the corneas of keratoconus patients. Patients enrolled in the trial will receive either a hyaluronidase or a saline injection, and topical glycerose or saline stabilizing drops.
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Kate Love
Just another vote in favour of sclerals. They may not enable me to drive, but they do mean I can see and carry on working etc. I am amazed Ken Pullum hasn't registered his vote in favour of sclerals...come on Ken!!
Sue Ingram - glad you had a great holiday. Sorry to hear about your mum, and hope she continues with the good recovery. Are you going to the AGM?
Sue Ingram - glad you had a great holiday. Sorry to hear about your mum, and hope she continues with the good recovery. Are you going to the AGM?
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