Is there a lower age limit for C3R?
Moderators: Anne Klepacz, John Smith, Sweet
Cross-linking age limit
Can anyone tell me if there is a minumum age for cross-linking and if so why? My son was diagnosed with KC in one eye last year when he was 11. Recently, we've learned that the condition has just started to progress in the other eye. My hope would be to find a treatment that can arrest this now. If he has to wait till he is 18 or so, there may be no point.
-
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
Murray
Welcome to the forum.
I am unaware of their being a minimum age for cross linking. What I do know is all the literature I have read on the subject has been done on adults.
This is probably from a legal perspective, just like you see clinical trilas of medicines pretty much only take place on adults.
Cross linking is 'relatively new'.
You say your son has recently been diagnosed. One thing with KC is that its progression can stop as quick as it starts and in the region of 90% of all KC suffers have a fullfilled normal ife by correcting KC with glasses or using one of the many types of contact lenses that are available.
Technology has come along way since I was first diagnosed 20 years ago and is still moving quite swiftly in the area of KC research too. So if your son can be fitted with glasses or contact lenses there may well be merits in waiting until he is an adult.
KC only held me back when I was 18 because contact lens technology was not adavnced enough meant I had to have a graft in one eye. If the same had occured now, I would never of needed the graft because the way things have moved on. Both my eyes have been stable for 2 years now.
It is good to be looking at what the options are and I think all here would recomend looking carefully at all the information before making a decision.
None of these treatments cure KC but they have shown benefits in the management of the condition.
Hope this helps.
Welcome to the forum.
I am unaware of their being a minimum age for cross linking. What I do know is all the literature I have read on the subject has been done on adults.
This is probably from a legal perspective, just like you see clinical trilas of medicines pretty much only take place on adults.
Cross linking is 'relatively new'.
You say your son has recently been diagnosed. One thing with KC is that its progression can stop as quick as it starts and in the region of 90% of all KC suffers have a fullfilled normal ife by correcting KC with glasses or using one of the many types of contact lenses that are available.
Technology has come along way since I was first diagnosed 20 years ago and is still moving quite swiftly in the area of KC research too. So if your son can be fitted with glasses or contact lenses there may well be merits in waiting until he is an adult.
KC only held me back when I was 18 because contact lens technology was not adavnced enough meant I had to have a graft in one eye. If the same had occured now, I would never of needed the graft because the way things have moved on. Both my eyes have been stable for 2 years now.
It is good to be looking at what the options are and I think all here would recomend looking carefully at all the information before making a decision.
None of these treatments cure KC but they have shown benefits in the management of the condition.
Hope this helps.
Gareth
Gareth,
Thanks for the welcome and for your reply. I appreciate it. I'm new to all this.
I think we will probably end up waiting and using lens. Hopefully this will work. However, I wanted to check out the cross-linking further. I hear Dresden is the place. But, I've also heard that they don't take foreigners. Is this true?
Murray
Thanks for the welcome and for your reply. I appreciate it. I'm new to all this.
I think we will probably end up waiting and using lens. Hopefully this will work. However, I wanted to check out the cross-linking further. I hear Dresden is the place. But, I've also heard that they don't take foreigners. Is this true?
Murray
Murray,
On the other hand, what Gareth did not say was that contact lenses do not stop Keratoconus and also the young have longer for their Keratoconus to progress and so this is why more young patients are being treated with crosslinking by those who developed it.
The percentage quoted for transplants vary from 10% to 20 % in needing them, the NKCF quotes 25%, so that either one in ten people who needs a transplant (which is a lot!) or one in four (which is a lot too!) So if the patient is younger then these percentages may rise as these percentages cover all age groups.
Its best to get advice from a Dr who knows about all the options, and not someone who "thinks" they know.
BTW whos going to look in to Hari's listings? I think only someones who retired will have the time?!
On the other hand, what Gareth did not say was that contact lenses do not stop Keratoconus and also the young have longer for their Keratoconus to progress and so this is why more young patients are being treated with crosslinking by those who developed it.
The percentage quoted for transplants vary from 10% to 20 % in needing them, the NKCF quotes 25%, so that either one in ten people who needs a transplant (which is a lot!) or one in four (which is a lot too!) So if the patient is younger then these percentages may rise as these percentages cover all age groups.
Its best to get advice from a Dr who knows about all the options, and not someone who "thinks" they know.
BTW whos going to look in to Hari's listings? I think only someones who retired will have the time?!
-
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
Murray,
Dresden are the pioneers within Europe, but the stopped taking foreigners when the techneque started to become more widespread.
There are a few private clinics in the UK doing crosslinking.
My understanding is that some NHS areas are dicussing plans to do a study using the crosslinking. To do this thet need to write a protocol which outlines a Design of Experiment' that details what they will do, what the aim is and how the data will be analysed etc.
Then NICE which you may have heard about preventing/allowing cetrain drugs to be prescribed are likly to have a say regarding crosslinking becoming available on the NHS. They are responsible for clinicl excellance and ensuring the NHS gives value for money.
As Sajeev pointed out contact lenses will not stop KC, but like I put originally there is no such thing as a cure, but different ways of managing the condition.
Please let us know haw your son gets on. We have local support groups where patients and familly members can meet and exchange experiences and share concerns, so it is not all internet based.
Ask as many questions you like, you may feel some are stupid, but I could pretty much gurantee there will be dozens of others too worried to post the same question they would dearly like answering.
Dresden are the pioneers within Europe, but the stopped taking foreigners when the techneque started to become more widespread.
There are a few private clinics in the UK doing crosslinking.
My understanding is that some NHS areas are dicussing plans to do a study using the crosslinking. To do this thet need to write a protocol which outlines a Design of Experiment' that details what they will do, what the aim is and how the data will be analysed etc.
Then NICE which you may have heard about preventing/allowing cetrain drugs to be prescribed are likly to have a say regarding crosslinking becoming available on the NHS. They are responsible for clinicl excellance and ensuring the NHS gives value for money.
As Sajeev pointed out contact lenses will not stop KC, but like I put originally there is no such thing as a cure, but different ways of managing the condition.
Please let us know haw your son gets on. We have local support groups where patients and familly members can meet and exchange experiences and share concerns, so it is not all internet based.
Ask as many questions you like, you may feel some are stupid, but I could pretty much gurantee there will be dozens of others too worried to post the same question they would dearly like answering.
Gareth
-
jayuk
- Ambassador
- Posts: 2148
- Joined: Sun 21 Mar 2004 1:50 pm
- Location: London / Manchester / Cheshire
Murray
Just to confirm, where possible Dresden are no longer taking overseas patients if they have knowledge of local Opthams performing the surgery.
Your best bet, as Gareth has said is to approach one of the UK places, I have PM'd you the details of the ones; as you requested
If we can help anymore feel free to ask
Jay
Just to confirm, where possible Dresden are no longer taking overseas patients if they have knowledge of local Opthams performing the surgery.
Your best bet, as Gareth has said is to approach one of the UK places, I have PM'd you the details of the ones; as you requested
If we can help anymore feel free to ask
Jay
KC is about facing the challenges it creates rather than accepting the problems it generates -
(C) Copyright 2005 KP
(C) Copyright 2005 KP
Just to let those interested, that I was just sent a email by the a Dr who is the head of crosslinking in Germany that anyone is welcome in Germany for crosslinking even though there may be crosslinking being done in their home country and that no rule has been adopted for this.
I think previously spammer's/time wasters emailing the center at Dresdon have put out the wrong information on this as they could not be helped themselfs.
Regards
I think previously spammer's/time wasters emailing the center at Dresdon have put out the wrong information on this as they could not be helped themselfs.
Regards
Return to “General Discussion Forum”
Who is online
Users browsing this forum: No registered users and 36 guests