UK Keratoconus Self-Help and Support Association

Merry Christmas All,

Been ages since I posted and it's not because I did not need to post. But life has a habit of biting you in the bum just when you don't expect it to. My Mum was diagnosed with Bowens Disease in her case an early stage of skin Cancer and my eldery Aunt - who has no one else locally - fell and broke her hip which triggered a whole host of unforseen visits and things to sort out. She is in a convelescence home at the moment but they are shipping her home on Friday although she can't even walk up her stairs

Added to this David went for a checkup and they found that the KC had progressed in his right eye and that he needed a new lens. Four weeks later we are back for a fitting to find it had progressed again and the lens was no good David pleaded with them to have his lenses back for Christmas - they were taken from him all together - but here it is Christmas Day and David is wearing his glasses and is very depressed. The KC certainly has more impact on his life than his autism and I never thought that that would be possible. I am very worried about his right eye and only hope that it's not the lens that has caused the KC to progress.

Carole

Carole

Im sorry to hear of all this issues!

With regards to David, I really do think that C3R would be something David would benefit greatly, even its it stabilising the KC.........is it worth progressing with the Hospital?.....or further?

Jay

Carole

You have been in our thoughts over these days, as has David. Tell him we are with him!

Andrew

Hi Carole,

Sorry to hear about you troubles and Davids.

David does to to be at the point I was when I was 17. You get a lens made up just to find that the KC has changed in the time it took to make them rendering them useless.

I know this is not the news you want to read, but I beleive in honesty.

It was not long before a lens could not be made to fit (this was 20 years ago) so I had a graft as soon as my A levels were completed. The end resultwas a hard slog for post graft vision to come back, but it was by far the best KC choice I have ever made.

C3R is now available, so as Jayuk says this may well be worth a whie, but is only available privatly. Intacs might we worth investigating, have a look at my Intacs post in FAQ. As with all thinngs there is a down side in that David will still have to go upto 12 months with reduced vision in that eye befoe the full benefits may be realised.

From reading yours and Davids posts he is a bright kid and will probably be looking at the longer term rather than just the short term.

Sorry I am unable to help further. Please give David our best.

Merry Christmas and Happy New Year

Gareth

Thanks guys

You always help That's why I come here.

Thanks for your honesty Gareth I can handle honesty I am one of these people 'who needs to know'

I do not however have any idea what is CR3 is so can some please enlighten me. I will check intacks - in fact I will check out anything that helps. I am not one for burying my head in the sand. We did manage the Ice Hockey today although David could not see the puck - but he went and I had thought that he may not bother so I am pleased that I was wrong.

Off to read up now

Carole

Read up - and I now know what CR3 is I already knew - I know that now but not as CR3. So the question now is - is there anywhere in the UK where you can have this done?

Also what questions should we asking at the hospital about David's eyes and his options?

Thanks in advance.

Carole, C3R has literally only just obtained it's "CE" mark, and we know of a few opthalmologists who plan to offer the procedure. Hopefully, someone will point you in the direction of someone nearer you than London.

I've only heard of this being done in London, you might find a place if you put C3R in the forum search.

The costs I have heard range from £750 to £1250 per eye and I have heard this includes upto 12 months follow up.

Not yet available on NHS and if it does go that way funding might be as for intacs. In that most cases I have heard of from the specialists is that if they think you are a suitable candidate they then have to go and apply for funding from the hospitals funding budget so not routinely available as such. Hence the wait for intacs I beleive is while a case is put forward and waiting for the funding to be agreed by those who run the hospital rather than a lack of beds, space and so on.

Thanks again,

When David FINALLY goes back for his new lenses I am going to ask quite a few questions. I hear what you are saying about intacs and budgets and I wonder if it would make a difference because David is also autistic? It might go either way but nothing ventured nothing gained and asking costs you nothing.

As for C3R well I would hope that his Dad would be willing to fund that should it ever become a possibility - I know that he would.

Carole

Carole,

My understanding that when funding is applied for a full medical need has to be put forward so in Davids case as KC does has an affect on his KC that being a medical condition too would be taken into account.

One thing I forgot to point out earlier is that there is no guarentee vision will improve, however the aim is to provide a 'satble' corneal surface to fit a lens.

There have been cases in C3R where the KC has regressed a couple dioptres and the presentation on Intacs I attended at Birmingham showed that provided strict selection criteria were followed excellent results can be obtained. The patient scenarios we were presented with were very positive. In all cases initially the vision was worse but after 6 - 12 months vision was stable. The best case full vision was obtained with glasses in the other it was obtained with lenses.

A similr thing can happen with C3R where the condition has been observed to regress by a couple dioptres at the most.