question re lenses an progression
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sami ahmed
- Newbie
- Posts: 8
- Joined: Thu 14 Jul 2005 1:37 pm
- Location: scunthorpe
question re lenses an progression
my son 15 had recently been diagnosed as having KC in right eye left they is ok right has vision of 6/12.he is refered for corneal mapping and lenses. he is not limited in any way in daily activities and is best fielder in his cricket team.my question is does in present state he really need lenses as i understand they can cause some problems and secondly i am always given a guarded opinion re progression,can i know your personal experience,i am also told it will most liely end up with graft in both eyes in 5-6 years time and yes that worries me a lot.
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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 Sami,
Welcome to the forum.
1) If your son is not limited in his daily activities, he may well be able to get away with glasses. These can be fine for mild to moderate cases of KC. Lenses can cause problems, but many here have been wearing them for 20 years or more free from any problems. There are a variety of lenses from Rigid Gas Periable (RGP) corneal lenses, Scleral Lenses tha cover the whole eye but not the cornea etc, the main home page has a glossary of terms that lists many of these lenses. This information is worth knowing but the progression of KC is very hard to predict. Your son may never need any of these.
2) Progression is hard to predict as we are all different. A small percentage (about 5 - 10%) of all KC sufferers need a graft. Even fewer still need a graft in both eyes.
Grafts in most cases are considerd succesful 10 - 20 years on requiring either no correction or correction using glasses or contact lenses. The recovery period can be quite long.
A graft sounds horrific and it is stressful on the eye, but the procedure takes about one hour and the stay in hospital is anything from 24 - 72 hours depending on how well you are recovering. You will be supprised how little the discomfort is compared to having KC itself. A graft is a long term managemnt strategy which may last the rest of your life. This is not a cure as we would all have one if that were the case.
Technology has moved on in the 20 years I have had KC. If the lenses I wear today were available 20 years ago, I would never of needed a graft in each eye. Technology is still moving on in the field of KC so a graft in 5 years could be a thing of the past for KC.
Take it one step at a time, register your details with the support group and they will let you know of local groups who share experiences on a regular basis and you also get a news letter and a wealth of literature explaining the condition. This is all free, only a donation is asked for.
Many other here will share their experiences, but there is a lot out there to help. More now than when I was at school 18 years ago.
Welcome to the forum.
1) If your son is not limited in his daily activities, he may well be able to get away with glasses. These can be fine for mild to moderate cases of KC. Lenses can cause problems, but many here have been wearing them for 20 years or more free from any problems. There are a variety of lenses from Rigid Gas Periable (RGP) corneal lenses, Scleral Lenses tha cover the whole eye but not the cornea etc, the main home page has a glossary of terms that lists many of these lenses. This information is worth knowing but the progression of KC is very hard to predict. Your son may never need any of these.
2) Progression is hard to predict as we are all different. A small percentage (about 5 - 10%) of all KC sufferers need a graft. Even fewer still need a graft in both eyes.
Grafts in most cases are considerd succesful 10 - 20 years on requiring either no correction or correction using glasses or contact lenses. The recovery period can be quite long.
A graft sounds horrific and it is stressful on the eye, but the procedure takes about one hour and the stay in hospital is anything from 24 - 72 hours depending on how well you are recovering. You will be supprised how little the discomfort is compared to having KC itself. A graft is a long term managemnt strategy which may last the rest of your life. This is not a cure as we would all have one if that were the case.
Technology has moved on in the 20 years I have had KC. If the lenses I wear today were available 20 years ago, I would never of needed a graft in each eye. Technology is still moving on in the field of KC so a graft in 5 years could be a thing of the past for KC.
Take it one step at a time, register your details with the support group and they will let you know of local groups who share experiences on a regular basis and you also get a news letter and a wealth of literature explaining the condition. This is all free, only a donation is asked for.
Many other here will share their experiences, but there is a lot out there to help. More now than when I was at school 18 years ago.
Gareth
Hello Sami,
I have to say that it does sound as though you've been given the worst-case scenario prognosis!
In my case, I was diagnosed with KC at 24 (I'm 29 now) in the right eye only. Vision in the right eye 6/24.
My only option was a rigid lens.
Left eye is 6/9, but 6/5 with glasses.
I haven't found it easy to adapt to the lens, and have tried a few types. It does involve quite a lot of visits to the eye specialist/optician.
I was referred to an NHS hospital eye department, and they are pretty good.
My vision is not perfect in the right eye with the lens, the best is 6/9 on a good day or 6/14 on a bad day, but that is far better than uncorrected vision of 6/24!
Once I was used to the lens in the right eye, I asked to be fitted with a lens for the left eye (the healthy eye). I found that I was actually better having the lens in the right eye and glasses for the left, as it balanced things. It also protects your eyes from dust/pollen etc if they are sensitive, which mine are.
I have discussed the option of a graft with my ophthalmologist, but he is wary of it, and does not see any need to take such drastic action unless things become very much worse. It involves many visits to the eye clinic afterwards and there is a high risk of infection.
I guess the best option for your son might be for you to take out private health cover now, in the event of him ever needing sugery.
Here I am, 5 years on and no need for a graft.
Maybe you ought to get a second opinion from a more optimistic specialist!
I have to say that it does sound as though you've been given the worst-case scenario prognosis!
In my case, I was diagnosed with KC at 24 (I'm 29 now) in the right eye only. Vision in the right eye 6/24.
My only option was a rigid lens.
Left eye is 6/9, but 6/5 with glasses.
I haven't found it easy to adapt to the lens, and have tried a few types. It does involve quite a lot of visits to the eye specialist/optician.
I was referred to an NHS hospital eye department, and they are pretty good.
My vision is not perfect in the right eye with the lens, the best is 6/9 on a good day or 6/14 on a bad day, but that is far better than uncorrected vision of 6/24!
Once I was used to the lens in the right eye, I asked to be fitted with a lens for the left eye (the healthy eye). I found that I was actually better having the lens in the right eye and glasses for the left, as it balanced things. It also protects your eyes from dust/pollen etc if they are sensitive, which mine are.
I have discussed the option of a graft with my ophthalmologist, but he is wary of it, and does not see any need to take such drastic action unless things become very much worse. It involves many visits to the eye clinic afterwards and there is a high risk of infection.
I guess the best option for your son might be for you to take out private health cover now, in the event of him ever needing sugery.
Here I am, 5 years on and no need for a graft.
Maybe you ought to get a second opinion from a more optimistic specialist!
Sami,
Assalamualaykum,
Hope your sons coping well.
The above have explained about lenses etc. So i won;t say much apart from, myself i am rather new to KC and having found a lens which gives me great visuals, i'm not getting any comfort with the RGP's. Do explore all options of Glasses/lenses/other methods non surgical before considering a graft.
Yes, eventually he MAY need to get a graft but most important to deal with the task at hand and persevere!
Remember, Innallaha Ma-as sabireen!
Regards
Assalamualaykum,
Hope your sons coping well.
The above have explained about lenses etc. So i won;t say much apart from, myself i am rather new to KC and having found a lens which gives me great visuals, i'm not getting any comfort with the RGP's. Do explore all options of Glasses/lenses/other methods non surgical before considering a graft.
Yes, eventually he MAY need to get a graft but most important to deal with the task at hand and persevere!
Remember, Innallaha Ma-as sabireen!
Regards
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
To Shoayb
Hello,
I wondered if you would mind sharing with us the meaning of your salutation and ending to your message to Sami-I imagine that it may be Arabic, but I have no knowledge of the language. It certainly sounds beautiful.
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Asif
- Regular contributor
- Posts: 141
- Joined: Wed 01 Sep 2004 5:13 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
Asalaam u alaykum - Peace be upon you.
Inshallah ma as sabireen - God is with the patient.
Hi Sami. I was diagnosed with KC at 17. At first i was coping with glasses and my daily life was not affected. However, my KC progressed fairly quickely and 6 months later glasses would no longer make a difference. At this time it started to get difficult doing some daily tasks. I the tried rgps which were kinda difficult to get used to. after a while i could not tolerate them anymore so was moved on to several different types of lenses. As my KC still continuously to progress quickly i could no longer find a suitable lens for my left eye and needed a graft at the age of 20.
As mentioned above, see how it goes. Progression is different with everyone and you son may never need a graft if he can cope with glasses or contact lenses. There are many different types of contact lenses available and new treatments may be available in the future.
Inshallah ma as sabireen - God is with the patient.
Hi Sami. I was diagnosed with KC at 17. At first i was coping with glasses and my daily life was not affected. However, my KC progressed fairly quickely and 6 months later glasses would no longer make a difference. At this time it started to get difficult doing some daily tasks. I the tried rgps which were kinda difficult to get used to. after a while i could not tolerate them anymore so was moved on to several different types of lenses. As my KC still continuously to progress quickly i could no longer find a suitable lens for my left eye and needed a graft at the age of 20.
As mentioned above, see how it goes. Progression is different with everyone and you son may never need a graft if he can cope with glasses or contact lenses. There are many different types of contact lenses available and new treatments may be available in the future.
Lizzy/ Asif,
Firstly my apologiees for not writing the meanings! silly me!
Asif, thanks for the clarification!
Regards
Firstly my apologiees for not writing the meanings! silly me!
Asif, thanks for the clarification!
Regards
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
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Ben Watson
- Newbie
- Posts: 6
- Joined: Wed 16 Jun 2004 12:16 pm
- Location: Swindon, UK
Sami,
I was diagnosed with KC at an early age, having worn glasses from 4 years old I started with rigid gas permable contacts (rgps) at the age of 12 - I am now 28.
I honestly do believe that the contacts have helped to stem the progression of KC so, personally I would suggest your son to wear some kind of hard contacts i.e. rgps. Your eyes are still growing to the age of 25(ish) so by wearing contacts, this may help to stem the growth. Lenses do feel strange at first, however if the condition is not severe at the moment, the fit of the lens would not cause too much discomfort. Whilst the glasses may do a good job of correcting the sight, it wouldn't do anything to prevent the condition worsening.
Individuals respond to treatments in different ways, so what is good for one may not be the best course of action for someone else. Aside from the odd infection, I wear my lenses for around 15 hours per day without any issues.
I would suggest to initially try the contacts and if it works, great! There are other options if this doesn't work. Do not be afraid to try though.
I was diagnosed with KC at an early age, having worn glasses from 4 years old I started with rigid gas permable contacts (rgps) at the age of 12 - I am now 28.
I honestly do believe that the contacts have helped to stem the progression of KC so, personally I would suggest your son to wear some kind of hard contacts i.e. rgps. Your eyes are still growing to the age of 25(ish) so by wearing contacts, this may help to stem the growth. Lenses do feel strange at first, however if the condition is not severe at the moment, the fit of the lens would not cause too much discomfort. Whilst the glasses may do a good job of correcting the sight, it wouldn't do anything to prevent the condition worsening.
Individuals respond to treatments in different ways, so what is good for one may not be the best course of action for someone else. Aside from the odd infection, I wear my lenses for around 15 hours per day without any issues.
I would suggest to initially try the contacts and if it works, great! There are other options if this doesn't work. Do not be afraid to try though.
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