UK Keratoconus Self-Help and Support Association

I read on another forum that a graft does not last for life, some say 10-30 years. This was new to me as I have allways believed that they last for the rest of yous life...

Noone can actually provide stats on this as many many people have not been followed up post graft over the last 30-40 years.........

However, the life of a graft depends on sooo many things

endothelial cell count
rejection episodes
alighnment
infection

Any of the above can end the life of the graft material if not treated immediately.

I dont think a graft should be thought of as a cure...but more of a temporary management option. I think we are still some 10 years away from when we can actually say that a graft will eradicate the effects of KC in the eye.

The two areas which will assist in grafts being seen as a cure; in my opinion, are

a) Anti Rejection Methods
b) Laser assisted corneal re-attachment

Both of the above are actually in research, whereby the latter has already been tested with great success in America. The former needs more research which I beleive Moorefields have been part of.

Hope that helps

I agree, i have never thought that a graft would last forever, although you do hear of some good success stories! That is why it is the last option when you have exhausted everything else. If nothing else works it would seem to be a good option to all least try it!!

Sweet X x X

This is what scares me the most, what keeps me awake at night sometimes. My first graft [and my good eye] is 20 years old, it's failure is my greatest fear.

Hmmm well the longer its clear and has lasted the better!!...so thats def going for you!

I know Jay, and I'm thankful for it everyday.
It's the not knowing I find hard, I wish someone could tell me whether I will have this for life, or if I won't at what point I will lose it. I find it easier to deal with what I know, even if it's bad.
This is a painful area for me because I am a voice hearer, what some psychiatrists chose to label as "Schizophrenia" but I don't subscribe to the medical model and have my own explanatory framework and range of coping strategies. My voices taunt me about a lot of things which I have my own way of dealing with. If they say I caused the Holocaust I can counter that with my date of birth, I wasn't born when WW2 was happening. However it's different when they taunt me about my eyes. They will sometimes be relentless and tell me that I only have 5 years of sight left or that the slightest irritation is the beginning of lens intolerance or graft failure and I can't counter that because I don't know. They remind me of how depressed I was when I was younger when I had reduced vision for a couple of years, they remind me of how much damage I did to myself when I lost hope. They tell me how I wouldn't cope again and I know they are right about that part. The optham's are not aware of this because I wouldn't want them to start treating me any differently or withold information from me. Sorry, I know that's a bit heavy, but given 1 in 4 people will experience mental distress during their life, there must be other KC folk out there who might experience some interaction of, or impact on their mental health.

Hmmmmm..well you def got me there!!

But you know, I actually know what you are talking about!.....we all have elements of mind issues that we never tell anyone, and I am not an exception to that........

Up until 18 I had Obsessive-Compulsive Disorder....however then (about 10 years ago) there wasnt enough info about this......but basically...I had to do things a number of times and it was well irritating!.......it would be silly things...like if I read a poster Id count the words, in three's, three times and couldnt look away till I did,....Id check the cooker to make sure I had turned it off in sets of three, Id count the number of letters in the word and then count the words in the sentence.........etc etc....list is WAAAAAAAAAAAAAAAAAAAAAAAAAAAY to long!..........and I never knew why I did that.....and never told anyone also!.....I just thought we all did it !!.....

I laugh about it now but at the time it was frustrating!!........i had this from 11 - 17or 18......thats my only claim to being unique whilst growing up lol!

Understood. I remember someone I was in hospital with long ago who experienced her distress in the way you did, it took up so much of her time and looked really exhausting.
Moorfields know there are issues in this direction, infact it was amusing to me when the SHO clerking me for the 2nd graft put his hand on my knee and asked very sweetly, 'No tell me, how does your Schizophrenia affect you?' I found it so hard not to laugh, I was tempted to reply 'You want a practical demonstration?', but they don't know about how the voices taunt me about my eyes.

Hi Louise,

I have no idea if any of this will help, but here goes;

1) As Jayuk says, the longer a graft lasts, the lower the chances of post graft issues.

2) Since becoming part of the support group and speaking, e-mailing many with KC, especially those in their 30's plus, many have experienced depression in one form or another and had anti-depressents and councelling. In that respect you are in good company, but I am unable to help with the other issues you have with coping with KC related feeeling down. I will refrain from insulting you and refrain from profering advice/suggesting things on a subject I will admit to being ignorant about.

3) Being part of the support group has been helpful to me as when I first developed a problem with my right grafted eye, I found it difficult to cope, but the people here turned that around for me. Some of our suggestions can seem outlandish, but have on many occasion been prooved to work. I have also met a guy who can not cope with lenses due to intolerance but is fearful of a graft. He is registerd partially sighted, but he has a good career and homelife and has shown me that it is possible to cope with KC in a partially sighted world. This has given me renewed hope that should I choose to give up the lenses my life will carry on in a near normal way. I hope this gives you some hope too.

Regards

Gareth

Thanks Gareth, like your signature by the way!
It would be interesting to know more about the percentage of people who have experienced mental distress in relation to KC or experience an exacerbation of existing distress in relation to KC. Perhaps a survey?
I'm not only thinking about KC services here, I'm also considering the way mental health services are rather inept in responding to people with any sensory difference. Not a single mental health professional ever shared a conversation with me about my eyes.
I see a hearing impaired friend practically ignored when he is in hospital. He loses his aids in a crisis and psych nurses will shout at a deaf man or fail to see that they need to write things down!
I was appalled by experiences of a completely blind friend. When I contrast that to how I was treated at Moorfields when I was admitted with an episode of rejection there's no comparison. I was in crisis and they were brilliant, the nurses there could teach a few things to psych nurses, they have a respect for vulnerability and knew how to support a person without being intrusive, they impressed me.
I guess I have yet to believe [for myself that is] that life would still hold meaning for me if I ever had to live with permanent partial sight.
I do celebrate how members cope and don't care how outlandish suggestions are, I'm used to outlandish!
Does anyone know what partial sight, as in being registered is? What are the figures, at what level is a person registered?