Thorny questions about expert advice...

[GarethB]

Sweet,

Playing Devils advocate here just to amke sure we discuss sucj things in as much detail as possible.

It has been commented that here it is the more extreme cases of KC and I would suspect grafts too. There are perhaps more graft horror stories than great successes. I know if I am not careful about talking about my grafts that my current situation can be taken out of context and put anyone off having graft despite the fact I am all for them.

Perhaps the faq as mentioned earlier needs to be put in some form of order now we have it and linked to the registration side of the board and for an area non-registerd members pass through to get to the main board. Trouble here is will entry to the forum for them be too convuluted and turn them away from the help they want.

I know it looks like I am throwing up obstacles, but we need to ensure as a group we consider as much as we can. Here input from peopl such as your sister; why does she not like visiting the board? Surely it is not because you are here

We have talked about general mailers to all in the group, but it might be worth considering on any future questionaire asking if these people have internet acces; are they registerd with the forum; do they regularly post; if they do not post why not.

These 'silent' people may well have the key to unlocking what it is we want to be able to offer them. The trick is getting them to talk to us.

[Michael P]

Gareth, I think many of the answers to your question have already been made in some of the earlier posts.
I think the biggest problem is keeping the balance right. It is easy for a doom and gloom mentality to prevail as by nature we will hear more about problems than successes.
I think we are generally doing a good job with newbies and the basic message is don't panic and let's put everything into perspective. There is life after KC.
I think newbies need to know that they should exhaust all avenues before having a graft and they should know the pro's and con's.
I have not had a graft so I am not best to advise beyond this point but from what I have read on the forum, it appears the chance of a successful graft are very good and generally the after effects are more discomfort than severe pain. The operation can be done under local anaesthetic and normally one is out of hospital the next day. I understand the recovery period can be off putting, 12 to 18 months although some patients have found good vision very quickly.
Now if my assessment is reasonably accurate and I hope it is then I think the forum has done a pretty good job and has certainly taken out the fear factor for me. Perhaps we could have more information on the chances of failure/rejection and the likelihood of finding good vision post graft, irrespective of whether lenses need to be worn.

[Andrew MacLean]

Well, I just read through all the posts on this string, and before I go and lie down in a darkened room, I just wanted to make a couple of points.

Firstly, not a single Newbie has posted in this string. That makes this string almost unique, in my experience. I see that Lynn does claim to be posting on their behalf, but no support has come to her from the very people for whom she sets out her case.

Secondly, much is made of a supposed "doom and gloom" attitude that is imagined to populate the strings in this forum. I ask, "where?" I do not plead guilty to ever posting a "doom and gloom" message, but did notice at one time that Ali rebuked me for being too up beat in responding to a newbie who was having difficulty inserting and removing lenses.

Thirdly I'd like to ask what ought to be the response if somebody posts a message asking for help in coming to a decision to have a graft? There can be problems with the graft, and it is not a cure-all for KC. All you have to do is read the experience of James and others to find that the problems are real enough. Alongside their very important contributions I have tried to be positive and upbeat about my own graft.

The value of the forum is that we can be honest here. For it to remain valuable we need to be honest. Ali was right, and although during the years that I could use lenses I found it easy to get them in and out, I ought to have stated in that long ago time that I did develop lens intolerance after over twenty years, and became unable to wear lenses any more.

Some people are more comfortable being "lurkers" (my nephew's word for people who trawl through strings but do not post). They are gleaning information and on the basis of the information they get here and from their ophthalmologists and optometrists, they will be making decisions, too.

Let's not become so self conscious of our postings that we fail to do the very thing that is most attractive and important about this site.

Now, where was that darkened room. Does anyone have a cold compress?

Andrew

[GarethB]

Andrew, considering you are not well although I admire you still posting, please follow doctors orders and get yourself fit and well first.

Still it is still good to read your thoughts.

Andrew is right we need to remain upbeat where possible as I am sure a positive outlook does wonders for our ability to work through lifes problems.

Where there are potential issues with grafts I think we need to ensure that we remind people that rejection as far as I am aware is less than 2% of all grafts and only about 10% of people with KC go on to need a graft at some point in at least one eye. Fewer still go on to need a second graft.

I think we may well be at a point we could start to put together another support group leaflet about grafts which answers these common questions;

Why is a graft carried out
DALK & Penetrating
What is involved
Typical post op care
Why good vision is not guarenteed; Mr Tuft gave a very good explanation at the AGM
Graft lifetime
What are the potential problems and what do I do

and so on.

This will not help with the decisions but if we get some upto date stats so everything is as much in perspective as we can.

With that available as a download the early basic info many afre after will be closer to hand.

[John Smith]

Just an interesting aside to Gareth's post: rejection rate of 2%? I've not heard that one... is that the number of grafts that have to be redone because of rejection? And are we only talking full-thickness grafts?

Yes, it probably is a good idea to state the percentages somewhere, but we need to be careful to state the facts very accurately, which can be difficult as often the professionals don't agree!

[GarethB]

John,

My information may well be out of date but it was relating to rejection episodes rather than a regraft due to rejection.

This is where we would require a professional to prrof read what we put together to make sure what we quote is accurate to the best of our knowledge.

What I should have said in my earlier posts where I quoted figures is that this is from my research and so may well be completely wrong and not representative of corneal grafts as a whole.

Sorry for any confusion or alarm this may have caused.

Gareth

[Anne Klepacz]

Just another (gentle) reminder that our booklet 'Keratoconus - Some Questions Answered' is in the form of answers to frequently asked questions and is a very useful introduction to KC for those newly diagnosed (and to those who find themselves further down the line). It was written by one of the senior optometrists at Moorfields, with input from the KC group and last revised in 2004 so it doesn't include some of the newer developments which are just becoming available (Intacs and C3-R) but does cover the contact lens options and basic information about transplants. It is sent out to all who join our mailing list.
The committee has in the past discussed whether it should be made available on the site. The main reason we haven't done this up to now is that, apart from members donations, sale of the booklets (to hospital eye departments and opticians) provides much needed income for the KC Group. We may need to rethink this policy in the future, and one compromise may be to put it on the 'members only' section of the website which can only be accessed by 'full' members of the group.
So I'd encourage anyone who has recently joined the forum (UK only I'm afraid) to join our mailing list too and receive their copy of the booklet.
Anne

[Carol Vines]

well having just read through all the posts here on this thread i would just like to say that my own experience of coming on this forum and going to KC meetings is a good one.

i was diagnosed at 14 back in 1981 and until 2002 had never had any contact with any other KC sufferer; for me i found it helpful to know that my problems, fears, etc relating to KC are not unique, just to know i'm not suffering alone helps. my optician i see now is wonderful but sometimes its helpful to ask questions on here first, then i go to him and discuss it with him to work out what is best for my KC at this time.

if it wasn't for the support and positive attitudes of others on here i wouldn't have persevered with my lens refit, on a bad eye day it can sometimes be hard to not feel sorry for oneself and to feel like giving up but knowing others out there have got through far worse has got/will continue to help me remain positive about KC.

[Lynn White]

I would just like to jump back in here and say I am not saying anything against the support that this board gives to people with manifest KC, for which I have nothing but admiration! I am talking about several diffferent issues.

Many people who joined this board even a year ago were more than likely, like Carol, someone who had had KC for a while and were seeking a place to discuss the condition and acquire information about contact lens options, grafts and so on.

However, with the increased popularity of laser surgery and the increase generally in internet usage, many people registering are more likely to have forme fruste KC. This means KC that is so mild, it may never have been discovered if they had not gone for laser surgery. It very likely will never progress at all. Others may progress very slightly but still manage very happily with spectacles. It is quite possible that had these people not gone for laser surgery, it would never have been detected.

Most of you active on these boards are used to a more agressive manifestation of KC. As I said in an earlier post, this is why you are all here! So to be honest, your advice to such newbies can be slightly erroneous, as it based on personal experience of a KC that advances quickly and sometimes needs a graft to resolve your visual problems.

Now, I do not actually know a major poster here who falls into the category of forme fruste? This is because from their point of view, once they have got over the shock of diagnosis, they have no real ongoing issues that are regularly dealt with by the board members. It is a little hard to pop in a query about flare round lights, photosensitivity, mildy wandering spectacle prescriptions in between intense and detailed conversations about grafts,. loose stitches, scleral lenses and so on... Its all very English, but people feel embarrrassed to complain when others are having such a hard time.

It is these people I was just asking if the board could cater for more than at present. I was also pointing this all out as I suspected many here might not be aware of how mild the condition COULD be. I was certainly in no way trying to undermine the excellent work you all do in suporting each other!

Anne, if the information in the leaflet you are talking about was just put in a FAQ, I do not think you would lose that many sales of the leaflets. After all, they are aimed at people who do not frequent the internet really. I do think that would be so helpful to newbies!!

Gareth, I have contacted my professional body and they are going to discuss getting the KC info onto their website and also the possibility of sorting a list of KC friendly optoms which would go on their website also. I'll let everyone know how that goes, but it will be June before the relevant committee meets, so I won't have info till at least then.

Lynn

[GarethB]

Lynn,

Even a link from the optoms web site to here would be a good starting point.

Here is an idea that the group might want to work with the optomotrists association and that is to put one of the business cards Anne has had made for the group inside their next news letter.

I am sure the optoms this would go to would be like many of the people I work with when they get industry publications in that useful snipets of information are kept should they have relevenc in the future. A card such as Anne has made put on an optoms noticeboard would be valuble for that optom when the next get a client that announces they have KC. The optom may well admit they are not too familier with the condition, but from my experience these same people will go straight to a source of information and start to learn as there is an immediate need. A similar thing may be possible to include for GP's in their 'industry' news letter.

Possibly a bit late for the optom groups next meeting, but a KC stand at their AGM would be useful. I am sure many optoms would approach the group for a better understanding of the condition and for those who are famillier with the condition wuold still talk to us to better understand the role of the group so that they themselves can offer a better initila support to those Lynne refers to that have been newly diagnosed or only have the KC in a very mild form.

I am sure there will be plents more commnets around this.