Settin off to group meeting now :)

[tommy.dean]

Just about to set off too manc now, going to visit some family before i go too the meeting. looking forward to meeting other people with keratoconus for the first time eeee am all excited lol
tom

[tommy.dean]

hey all meeting went brilliant, I'd like to thank mike and anne for setting it up It nearly all went pear shaped when i asked the corneal nurse a few questions and she thought i was attacking her, but sorted it all out in the end i knew her anyway and get on with her she was just at wrong place at the wrong time . anyways i got a couple of my questions i have answered so it was a step in the right direction!! was really good meeting other people with keracotonus i really enjoyed talking an just being round people who could understand, I really think that the manchester group is going to be a good thing for us northern KC'ers it's helped me feel not as alone already. anyways gunna try get some sleep now
tom

[Steven Williams]

Yes thanx to Mike and Anne for setting it up, and to the reps from MREH Dr Cindy Tromans and Debbie Morley . I arrived home around 10pm!

Great to meet you Tom glad you made it, imo you raised some very relevant points. Nothing wrong with raising tough questions.

I really think that the manchester group is going to be a good thing for us northern KC'ers

Absolutely agree . Look forward to the next meeting.

[tommy.dean]

Thanks Steven it was nice meeting you as well, I think some of the questions I asked were a bit out of order and only relevant to me, but hey am a young man still learning from my mistakes. Some of the questions regarding treatment options for keracotonus need raising with people a lot higher up tho, imo a lot of the keracotonics strugling with their day to day life don't need to be and its lack of funding/knowledge holding them back. I was shocked to find out the real reason I was told i couldn't have laser on my left eye was because the nhs had pulled its funding of it, I really think that's an issue that needs to be resolved as being a post graft keracotonic myself who's had laser I understand fully the benefits and just wish everybody who needs it could be offered it also. In the discussion i was misunderstood when i commented on "endophelium replacement" what i was trying to get across is why perform a penetrating keratoplasty and replace the endophelium when generally us as keracotonics have healthy endophelium's with good cell counts if i quote cindy "the problem in keracotonics is in the stroma, not the endophilium". This the reason why i cannot get my head round understanding why penetrating keratoplastys are performed i'm sure my endophelium was healthier than the 40 year olds it was replaced with! Also this is the reason why people need re grafts after rejection phases when the endophilium is damaged due to rejection, in DALK's this is not the case because the endophilium is still your own so it isn't effected as badly. I could type about this all day going round and round in circles bassicly what i'd like to see is the ecminer laser at manchester being used for keracotonics who need it, not just people with £££ and also i think there needs to be a big push from us as a group so the nhs starts to bring in or at least test some of the new treatments that are available to us and have been proven in many of study to benefit our condition. The first keratoplasy was performed in 1905 in the czech republic, "we've land on the moon since then" is the saying that comes to mind for me, i think we'll all see a big change in corneal transplants for keracotonus in the near future, that's if there needed with the use of c3r to stop progression.
tom

[GarethB]

KC affects 1 in 2000 (approx, know one knows exactly but we are trying to get more accurate figures), so based on what we know and witha UK population of about 60 million, ther are potentially 30,000 with KC, far less than most other conditions we read about in the media, so we will always have an up hill strugle.

This the group is trying to adress.

Regarding grafts, the norm now is a DALK. It took a while to become this way because the interface between the cells was always poor and gave a poorer outcome to the PK. Now the technology has moved on DALK is the norm.

Still need a PK, because scaring can be so deep in the cornea it affects the endothelium regardless of age. If you have had hydrops too, this can often mean a PK is the only option left when al other treatments ahve been tried.

Intacs have gone through the NICE evaluation adn we are awaiting their recomendations. C3R still has questions surrounding it, but I imagine that any hospital wanting to offer that (provided the consultant is trained) will do as they currently do for intacs and apply for funding on a case by case basis. Eventually that will go through the NICE process and may become available on the NHS.

Unfortunatly because we are such a unique and small group it takes longer to get patients through the system so we have the required information to decide if the treatment is worth it.

We need to remember that only about 5% of people with KC need a transplant, fewer still needing one in each eye. That is only 1500 people across the whole KC population that would probably need/currently have transplants.

Who knows out of what is left would meet the treatment criteria for intacs or C3R?

[tommy.dean]

Hey gareth, You made some good point's in that post you all have my greatest respect for the work you do, but when scarring is deep they can still perform dalk's it's just a lot harder for them as they will have too cut deep an the risk of decimer layer perforation will be greater, I think in reality only a few people with keracotonus truly need a penetrating keratoplasty and if where all honest about it should any keracotonic person be left in a situation where there eye is that bad?
They seem to be alot more erm "cautiose" shall we say up in the north regarding new techniques. Do you think maybe when keracotonus is extreme the patient should be sent to a hospital, one which could offer all these options?
I know in hindsight looking back at me in particular c3r could have been used when i was 14 - 15 when the cones were progressing very rapidly this would have stopped my eye's from ending up in the state they were in and needing to have transplants.
tom

[GarethB]

Any patient can choose to go to a hospital that offers these options in their area. We are entitled to choose from 4.

Question is, How do we know which offers the services we need?

That is where the support group comes in and in the Midlands that is happening.

Not sure about Manchester, but the consultant that treated me lives near Durham. I lived in Teesside for 10 years and for 5 years after elaving still went North to see him. He is always exploring new treatment options and practices in the NHS hospitals as well as having his own private practice.

Should someone be left until their KC is so bad they have scaring?

Personally I think not, but I must respect other peoples wishes. In the Birnmingham group we have a guy who's KC is so bad, lenses no longer fit, he is legally blind and has a guide dog. He has corneal scarring and a PK is all tht would be suitable. I can tell you this, there is no way on this earth that you will persuade him to try having a graft.

So really it is us the patient that can choose if we leave the graft until it is so bad we have to have a PK. I have heard people backing out of the graft when they are just about to have the aneasthetic, you may have signed the concent form, but while you are still conceous you can back out at any time.

[tommy.dean]

Thanks gareth for the reply, maybe a list of hospitals participating in new techniqes could be set up i know which one should be at the top of the private section anyway

Professor Dan Reinstein
London Vision Clinic http://www.londonvisionclinic.com/

also

William Ayliffe (1 of the pioneers in Dalk surgery)
The Lister Hospital in London
(he is a consultant at a nhs hospital but i don't know whether he practices his techniques there and unfortunately i don't know which one it is)

I gave up on the hospital i was at after numerous discussions with quite a few consultants over quite a few years pre and post pk transplant, I realized that I'd have to go private if i wanted my eye sight to be regained to its full potential without correction, hense why i went to London. I'd love everybody with keracotonus to get the opportunity to meet Professor Reinstein and learn about his techniques, I know that's just a "pipe dream" but maybe a list of hospitals participating in these trials could be a step in the right direction and make decisions on surgery for all keracotonics that need it a lot easier & less stressfull.
Tom

[Steven Williams]

I'd love everybody with keracotonus to get the opportunity to meet Professor Reinstein and learn about his techniques

Maybe the Manchester group KC could invite him along to a future group meeting to do a presentation?:D

[Andrew MacLean]

Congratulations to the Manchester Group! It is good to know that there is another KC group meeting!

Andrew