Hello All.
I have just been diagnosed with KC after having a suspission for 3 or 4 years.
(Here comes the long story)
I have always had problems with vision, I had a squint from birth and have had at least 5 squint opperations, the last one when I was around 21 (I am now 32). Until recently (12 months) I have been able to control the squint except when i am rearly tired.
I went for a regular check up at the optitians 4 years back and for the first time had astigmatism correction in my left prescription. The next time i went for a checkup this had changed and so i was refured to the consultant at Sheffield eye clinic (the optitian mentioned Keratoconus in passing). There i was diagnosed with cataract in my left eye and told that it may or may not get worse.
Last year i went back to the optitians again as i was no longer able to control my squint. I was refured again and yesterday diagnosed with KC.
(Now the questions)
I dont feel that the vision in my left eye is very bad (I can read the third line down on the chart (is that bad?)), and with my right there is just a slight ghosting. The hospital has said that i will need contacts so will this help me to control my squint?
Is KC often confused with somthing else and how do i know that KC is rearly my problem as 2 years ago it was a cataract?
Do I have to inform DVLA, Incurance company, employer?
New to KC with Questions
Moderators: Anne Klepacz, John Smith, Sweet
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Carol Vines
- Regular contributor
- Posts: 70
- Joined: Mon 09 May 2005 2:58 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: Market Harborough
hi mark and welcome to KC, not sure if i can answer all your questions, sure others will be along with better answers than me but be patient as we all have good and bad days with our vision 
i never passed an eye test as a child and at 9 was told i had a lazy eye but glasses wouldn't help, at 14 i was diagnosed with KC and have wore various contact lenses since, now 39. so if they are recommending contact lenses i would give them a go they really can make your vision a lot better, they can take a while to get used to and the fit is a challenge for the optician
you will need to let dvla know, check with the opitican that your vision is up to driving standard regular, mine can vary so ask every time i go. letting your employer know is not required by law but could be to your advantage, they are bound to help with equipment at work etc and if you start needing time off they may be more understanding if you explain why.
not sure if contact lenses will help with your squint sorry. keep in touch with how you get on, KC is not the end just makes life more interesting
i never passed an eye test as a child and at 9 was told i had a lazy eye but glasses wouldn't help, at 14 i was diagnosed with KC and have wore various contact lenses since, now 39. so if they are recommending contact lenses i would give them a go they really can make your vision a lot better, they can take a while to get used to and the fit is a challenge for the optician
you will need to let dvla know, check with the opitican that your vision is up to driving standard regular, mine can vary so ask every time i go. letting your employer know is not required by law but could be to your advantage, they are bound to help with equipment at work etc and if you start needing time off they may be more understanding if you explain why.
not sure if contact lenses will help with your squint sorry. keep in touch with how you get on, KC is not the end just makes life more interesting
Caz
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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 Mark,
KC can be confused with cataracts by some opticians, it was with me, but the specialist confirmed KC.
Not being able to control the squint may be as the eye is relying on the other to do the work to compensate for KC. Therefore there is a chance that with contact lenses and the improvement in vision, your eyes can share the load more evenly and make the squint more controllable.
Third line down is good, my right eye with KC does not allow me to see where the chart is on the wall!!!!
To really confirm KC, a topographical scan is best. You look at a light and the compute maps the curvature of your eye. The more it deviates from the norm, the redder the colour becomes. Green is normal, red is not so good. This can also be very useful in getting a good fit for the lens. The back of the lens is made to go over the cone and correct the deformity. Tears between the lens and cornea make a nice smooth surface. The front of the lens is the part that corrects for any other minor sight defect such as myopia.
The lenses are fo teh Rigid Gas Permeable type (RGP) and you will start with the corneal lenses which come in sizes between 6 - 8 mm diamater. The optom will endevour to get a fit that allows the eye lid to comfortably move over the lens and also to make sure the lens stays in place when you look left and right.
Ghosting may be due to the need for contacts. If it is present when wearing contacts, this can be due to a void between the edges of the cone and the lens. In these cases, the Rose K style of RGP helps as it fits closer to the cone alround.
The form you need form the DVLA can be downloaded form the web site. If you join the KC group, you will be sent all sorts of info to help regarding work and homelife etc.
Good luck.
Gareth
KC can be confused with cataracts by some opticians, it was with me, but the specialist confirmed KC.
Not being able to control the squint may be as the eye is relying on the other to do the work to compensate for KC. Therefore there is a chance that with contact lenses and the improvement in vision, your eyes can share the load more evenly and make the squint more controllable.
Third line down is good, my right eye with KC does not allow me to see where the chart is on the wall!!!!
To really confirm KC, a topographical scan is best. You look at a light and the compute maps the curvature of your eye. The more it deviates from the norm, the redder the colour becomes. Green is normal, red is not so good. This can also be very useful in getting a good fit for the lens. The back of the lens is made to go over the cone and correct the deformity. Tears between the lens and cornea make a nice smooth surface. The front of the lens is the part that corrects for any other minor sight defect such as myopia.
The lenses are fo teh Rigid Gas Permeable type (RGP) and you will start with the corneal lenses which come in sizes between 6 - 8 mm diamater. The optom will endevour to get a fit that allows the eye lid to comfortably move over the lens and also to make sure the lens stays in place when you look left and right.
Ghosting may be due to the need for contacts. If it is present when wearing contacts, this can be due to a void between the edges of the cone and the lens. In these cases, the Rose K style of RGP helps as it fits closer to the cone alround.
The form you need form the DVLA can be downloaded form the web site. If you join the KC group, you will be sent all sorts of info to help regarding work and homelife etc.
Good luck.
Gareth
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
Hey there and welcome to the forum!
I was also told i had a lazy eye since birth, and then at 14 diagnosed with KC. My lazy eye, the left one, has never been able to read a chart, whereas the right was very good and has enabled me to see quite well. I have worn a lens in my right since then, and recently had a corneal graft on the left.
KC is not normally diagnosed until you are in your teens or older, so it is difficult until then to know what your vision problem is. There is research being undertaken to try to identify the exact cause of KC, so really it was probably a good diagnosis in the beginning.
On your employer it is up to you what you disclose, it is sometimes easier as in time you may need some time off and it would come out of the blue to suddenly tell them about a condition you already had. But it is up to you to decide. It does depend as well on what work you do, as sometimes employers can be very helpful, eg monitors etc for office work, and time off for check ups.
On DVLA, i recently had a lot of vision problems and had to declare it. I have always declared that i had KC but needed to have a visual acuity test to make sure i was fit to drive. I recently looked into this, and according to DVLA, they DO ask you about any conditions when you apply for a licence, but if you suffer with any vision changes they ask you to inform them, as they will NOT send you for regular vision checks.
You are not covered legally with insurance etc if you can't read 6/12 on a chart, and if the worst happens and you are involved in an accident you can have your vision checked. So i would strongly advise you declaring it, and making sure that your vision is ok to drive. Basically it is up to you to make sure, but some opticians can tell DVLA if they want to.
All eye charts are different, but the legal limit to drive is 6/12, which is usually the third or fourth line down, but you will need to check this with your opticians. This does not need to be in both eyes, and you need to wear lenses or glasses if you need them to read this far. You do need good peripheral vision though, which is what the visual acuity test is about, and some conditions do affect this. Again you need to check.
As for contact lenses, most of us with KC do wear them and tolerate them very well. You can get away with glasses for mild KC, but if it gets worse you may need lenses. I would say do give them a try, as it really does make a difference!!
Keep in touch and let us know how you get on!!
Sweet X x X
I was also told i had a lazy eye since birth, and then at 14 diagnosed with KC. My lazy eye, the left one, has never been able to read a chart, whereas the right was very good and has enabled me to see quite well. I have worn a lens in my right since then, and recently had a corneal graft on the left.
KC is not normally diagnosed until you are in your teens or older, so it is difficult until then to know what your vision problem is. There is research being undertaken to try to identify the exact cause of KC, so really it was probably a good diagnosis in the beginning.
On your employer it is up to you what you disclose, it is sometimes easier as in time you may need some time off and it would come out of the blue to suddenly tell them about a condition you already had. But it is up to you to decide. It does depend as well on what work you do, as sometimes employers can be very helpful, eg monitors etc for office work, and time off for check ups.
On DVLA, i recently had a lot of vision problems and had to declare it. I have always declared that i had KC but needed to have a visual acuity test to make sure i was fit to drive. I recently looked into this, and according to DVLA, they DO ask you about any conditions when you apply for a licence, but if you suffer with any vision changes they ask you to inform them, as they will NOT send you for regular vision checks.
You are not covered legally with insurance etc if you can't read 6/12 on a chart, and if the worst happens and you are involved in an accident you can have your vision checked. So i would strongly advise you declaring it, and making sure that your vision is ok to drive. Basically it is up to you to make sure, but some opticians can tell DVLA if they want to.
All eye charts are different, but the legal limit to drive is 6/12, which is usually the third or fourth line down, but you will need to check this with your opticians. This does not need to be in both eyes, and you need to wear lenses or glasses if you need them to read this far. You do need good peripheral vision though, which is what the visual acuity test is about, and some conditions do affect this. Again you need to check.
As for contact lenses, most of us with KC do wear them and tolerate them very well. You can get away with glasses for mild KC, but if it gets worse you may need lenses. I would say do give them a try, as it really does make a difference!!
Keep in touch and let us know how you get on!!
Sweet X x X
Sweet X x X
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rosemary johnson
- Champion
- Posts: 1478
- Joined: Tue 19 Oct 2004 8:42 pm
- Keratoconus: Yes, I have KC
- Vision: Contact lenses
- Location: East London, UK
Hi, and welcome.
As regards your employer: depends on the job you do, and how well you are coping with it.
If you are, say, a truck driver or an airline pilot - jobs for which you legally require good eyesight - yes, you should. Your employer may have a rule that you should. Otherwise, it's up[ to you.
As KC is a lasting condition (doesn't go away within 12 months) we are covered by the provisions of the disability discrimination act - this gives employers statutory duties in the fields of rehab for staff who become disabled, and for making "reasonable adjustments" to enable you to carry on your job. This may mean things like larger computer screen or access technology software, magnifying glasses or the services of a PA to assist with things you find hard to see.
There is funding available for this via Access to Work.
FOr more info on this, or a chat about what's possible, contact the Disability Employment Advisor at your local Jobcentre (no, you don't need to be on the dole to do this) or the RNIB employment advisor people.
Good luck, keeping asking questions.
Rosemary
As regards your employer: depends on the job you do, and how well you are coping with it.
If you are, say, a truck driver or an airline pilot - jobs for which you legally require good eyesight - yes, you should. Your employer may have a rule that you should. Otherwise, it's up[ to you.
As KC is a lasting condition (doesn't go away within 12 months) we are covered by the provisions of the disability discrimination act - this gives employers statutory duties in the fields of rehab for staff who become disabled, and for making "reasonable adjustments" to enable you to carry on your job. This may mean things like larger computer screen or access technology software, magnifying glasses or the services of a PA to assist with things you find hard to see.
There is funding available for this via Access to Work.
FOr more info on this, or a chat about what's possible, contact the Disability Employment Advisor at your local Jobcentre (no, you don't need to be on the dole to do this) or the RNIB employment advisor people.
Good luck, keeping asking questions.
Rosemary
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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
Some mail order places do yellow tinted glasses for driving at night. I find a light blue tint works best so I have some sunglasses with a very light tint. Good for at night, but useless during the day. I have another pair for day use.
My everyday cars have now had the windows tinted with a film that reduces the glare by about 40%, it is a very light tint on top of the normal one and does not look any darker, but driving this morning with lights and laods of spray it made a vast improvement.
Hope this helps.
Gareth
My everyday cars have now had the windows tinted with a film that reduces the glare by about 40%, it is a very light tint on top of the normal one and does not look any darker, but driving this morning with lights and laods of spray it made a vast improvement.
Hope this helps.
Gareth
Gareth
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