Hello, my name is Jayne and I live in Johannesburg, South Africa, I hope you dont mind me joining - as I am not living in UK!
My son, aged 15, has just been diagnosed with Keratoconus and I am still a little bit stunned. I have an appointment with specialist in about 10 days but in the meantime my thoughts are working overtime. I think the big question for me is, does this eventually lead to total blindness? after how long? I am sure these questions are not simply answered. Could somebody please let me know the different stages we can expect.
I would very much like to hear everybody elses experiences.
Looking forward to hearing from you soon.
NEW MEMBER
Moderators: Anne Klepacz, John Smith, Sweet
-
jayuk
- Ambassador
- Posts: 2148
- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Jayne
Welcome to the forum! Glad you joined to be honest as I think its very valuable to see how people from other countries cope and handle with KC; either whom have it themselves or who look after people who do.
To answer your questions
1) KC will NOT lead to blindess! And dont let anyone tell you any different. What it will do; possibly, is make the vision distored over X amount of time. I guess you need to understand that its the Cornea (the front of the eye) that gets affected in KC and nothing else. The majority of sufferers do very well with Glasses/Contac Lenses; and ONLY a very small % eventually have a Corneal Transplant. However, the latter you need not worry about! How well can your son see now?
Take a look at the following to get an overview of KC - http://www.keratoconus-group.org.uk/whatiskc.html
I am certain that over the course of the months you will have MANY questions. Just bear in mind that you can ask anything here and someone will have experience on it (assuming its KC related
)
Hope that helps
J
Welcome to the forum! Glad you joined to be honest as I think its very valuable to see how people from other countries cope and handle with KC; either whom have it themselves or who look after people who do.
To answer your questions
1) KC will NOT lead to blindess! And dont let anyone tell you any different. What it will do; possibly, is make the vision distored over X amount of time. I guess you need to understand that its the Cornea (the front of the eye) that gets affected in KC and nothing else. The majority of sufferers do very well with Glasses/Contac Lenses; and ONLY a very small % eventually have a Corneal Transplant. However, the latter you need not worry about! How well can your son see now?
Take a look at the following to get an overview of KC - http://www.keratoconus-group.org.uk/whatiskc.html
I am certain that over the course of the months you will have MANY questions. Just bear in mind that you can ask anything here and someone will have experience on it (assuming its KC related
)
Hope that helps
J
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Hi Jayne,
Welcome and we all understand your brain working over time, so hopefully we can put some of those fears to rest.
1) Does KC lead to total blindness?
No, KC leads to sight deterioration which can be mild to very extreme. Mild cases can be corrected with glasses and many severe case with one of the many types of contact lenses now available.
2) After how long?
KC is very unpredictable, but about 90% of people with KC cope fine for the rest of there lives with either glasses or conatct lenses.
In the extreme cases, a corneal graft may be necessary, but only in about 10% of cases and for some this can be after more than 30 years, for others like me, it can be within 12 month of diagnoses. KC is that unpredictable, it can stabalise as quick as it can start.
If you go to the home page, there are many downloadable files which expalin KC in more detail and the way it is managed. There is also a student leaflet which is of great help to students, their families and of course the school so your son can still get the education he and you desire.
If contact lenses are necessary, dependiong on the severity, the fitting can be as much an art as it is a science, but here in the UK, most eye departments have specialist contact lens fitting facilities.
The lenses I wear now are far more comfortable than those first available to me 20 years ago.
You will also see here many posts about corneal grafts, many that post here have the more advanced cases of KC. Therefore in some respects we do not always represent the general KC population, however we try and give a balced view.
Welcome and we all understand your brain working over time, so hopefully we can put some of those fears to rest.
1) Does KC lead to total blindness?
No, KC leads to sight deterioration which can be mild to very extreme. Mild cases can be corrected with glasses and many severe case with one of the many types of contact lenses now available.
2) After how long?
KC is very unpredictable, but about 90% of people with KC cope fine for the rest of there lives with either glasses or conatct lenses.
In the extreme cases, a corneal graft may be necessary, but only in about 10% of cases and for some this can be after more than 30 years, for others like me, it can be within 12 month of diagnoses. KC is that unpredictable, it can stabalise as quick as it can start.
If you go to the home page, there are many downloadable files which expalin KC in more detail and the way it is managed. There is also a student leaflet which is of great help to students, their families and of course the school so your son can still get the education he and you desire.
If contact lenses are necessary, dependiong on the severity, the fitting can be as much an art as it is a science, but here in the UK, most eye departments have specialist contact lens fitting facilities.
The lenses I wear now are far more comfortable than those first available to me 20 years ago.
You will also see here many posts about corneal grafts, many that post here have the more advanced cases of KC. Therefore in some respects we do not always represent the general KC population, however we try and give a balced view.
Gareth
-
Sweet
- Committee
- Posts: 2240
- Joined: Sun 10 Apr 2005 11:22 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: London / South Wales
Hello there and welcome to the forum. It is understandable to be worried about this condition with your son and the above replies have very nicely answered your questions! 
I would just like to add that i could never see with glasses and have been wearing contact lenses now for fifteen years, i'm now 29. I only wear them in one eye as with too much scarring in the other i have never been able to see with it. I do manage very well though with just vision in one eye and it was only last year that i had a few problems with infections and some corneal ulcers. This was with fourteen years of lens wear though so don't panic! Some here manage a lot longer than that!!
I would say to take it one day at a time and cross hurdles when you get to them. If we constantly worry about this condition we would never appreciate the good days we have when we can see!!
People post here mainly when they have a problem, but there are many more that we don't know of who never need to come here and ask for help so please don't feel disheartened here with what you read.
Take care, Sweet X x X
I would just like to add that i could never see with glasses and have been wearing contact lenses now for fifteen years, i'm now 29. I only wear them in one eye as with too much scarring in the other i have never been able to see with it. I do manage very well though with just vision in one eye and it was only last year that i had a few problems with infections and some corneal ulcers. This was with fourteen years of lens wear though so don't panic! Some here manage a lot longer than that!!
I would say to take it one day at a time and cross hurdles when you get to them. If we constantly worry about this condition we would never appreciate the good days we have when we can see!!
People post here mainly when they have a problem, but there are many more that we don't know of who never need to come here and ask for help so please don't feel disheartened here with what you read.
Take care, Sweet X x X
Sweet X x X
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Andrew MacLean
- Moderator
- Posts: 7703
- Joined: Thu 15 Jan 2004 8:01 pm
- Keratoconus: Yes, I have KC
- Vision: Other
- Location: Scotland
Jayne
Yes, welcome to the forum.
You ask some questions, and I think its worth giving another take on the issues you raise:
Does Keratoconus lead to total blindness? the answer is in two parts
a It depends by what you understand by "total blindness". if by this you mean the complete absence of any sight whatsoever, then the answer is "no".
b If you understand "blindness" as defined in most jurisdictions then the answer is that it can. Many people with Keratoconus in the UK are registered as blind or, more commonly, partially sighted.
But even here there is hope. After being registered I received a new cornea which has restored my sight.
For most KC sufferers their condition never approaches the place where they are registered blind or partially sighted. for the overwhelming majority of people with this condition there is the comfortable fitting of contact lenses over their weakened corneas that restores the roundness to the natural lens and gives them extremely good sight.
I was first found to be suffering from KC when I was at University. I wore glasses until I was in my mid thirties, contact lenses until I was 53 and then I had a graft.
I can now see better from my grafted eye than I can ever remember having seen before.
Your son and you should both be assured that whereas the prospect may be frightening, the experience of most of us is far less overwhelming. Things may change for your son, but they will typically change rather slowly, so that at every stage he has time to make adjustments.
All the best
Andrew
Yes, welcome to the forum.
You ask some questions, and I think its worth giving another take on the issues you raise:
Does Keratoconus lead to total blindness? the answer is in two parts
a It depends by what you understand by "total blindness". if by this you mean the complete absence of any sight whatsoever, then the answer is "no".
b If you understand "blindness" as defined in most jurisdictions then the answer is that it can. Many people with Keratoconus in the UK are registered as blind or, more commonly, partially sighted.
But even here there is hope. After being registered I received a new cornea which has restored my sight.
For most KC sufferers their condition never approaches the place where they are registered blind or partially sighted. for the overwhelming majority of people with this condition there is the comfortable fitting of contact lenses over their weakened corneas that restores the roundness to the natural lens and gives them extremely good sight.
I was first found to be suffering from KC when I was at University. I wore glasses until I was in my mid thirties, contact lenses until I was 53 and then I had a graft.
I can now see better from my grafted eye than I can ever remember having seen before.
Your son and you should both be assured that whereas the prospect may be frightening, the experience of most of us is far less overwhelming. Things may change for your son, but they will typically change rather slowly, so that at every stage he has time to make adjustments.
All the best
Andrew
Andrew MacLean
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Janet Manning
- Regular contributor
- Posts: 98
- Joined: Thu 25 Mar 2004 9:44 am
- Location: Abingdon,Oxfordshire
Hi Jayne,
Welcome to the forum. My two sons live in Jo'burg, so I'm over at least once a year. Next time I'm over maybe we could meet up. Unfortunately this may be a while, as I've only just returned from my most recent visit.
There are a couple of Optometrists near Jo'burg who are particularly interested in KC and lenses to treat it. If you email me on janetmanning@onetel.com we could chat about it.
Look forward to hearing from you.
Janet
Welcome to the forum. My two sons live in Jo'burg, so I'm over at least once a year. Next time I'm over maybe we could meet up. Unfortunately this may be a while, as I've only just returned from my most recent visit.
There are a couple of Optometrists near Jo'burg who are particularly interested in KC and lenses to treat it. If you email me on janetmanning@onetel.com we could chat about it.
Look forward to hearing from you.
Janet
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