UK Keratoconus Self-Help and Support Association

I use Miraflow and Steripod saline. I have scleral GP lenses.

I don't have the knowledge to express a view one way or the oyher. I am always a little worried by anything which is said to be the only treatment or cure for any condition or disease.

Simply being descibed by some or referred to as such doesn't make it so - although it would be great if it did!

I am all for free speech and for a frank and open sharing of views and experience, but that brings with it obligations and responsibilities. If libellous entries and posts are made, those libelled can and probably will sue. Those liable to pay any damages and costs will include specifically trustees...

Amarpal I was told when diagnosed in 1964 I would need grafts in both eyes before long. I was told the same about one eye or the other in the mid 80s and twice in the 90s. I'm still waiting but accept I have been lucky. Obviously there may come a time for any of us when a graft or other surgery is t...

I have only once experienced hydrops. Basically, it was like an opaque cloud that obscured vision but not completely. As I understand it they vary in seriousness but generally just clear up and resolve after variable periods of time. Mine took just over 3 months but some are, I understand, much quic...

No strong feelings about badges - but I wonder whether being "labelled" might lead to others placing us in an even less acceptable category than the eccentric who sometimes sees them and sometimes doesn't or moans because they need binoculars to read the destination boards at London Liverp...

I have to say that I for one just don't accept that there is no money left in the NHS. By implication this means everybody with any complaint relating to allocation of NHS resources may as well give up and go home. There are ambiguities and contradictions in what we are being told and they need to b...

I was just searching on Google for somewhere to order Ami Dose or Steripod saline. Guess what? When I entered ami dose, 2 of the 3 top results were extracts from recent entries on this forum.Makes you wonder how many people come across us by chance and where else the various threads are picked up. I...

I was given my first scleral lens in 1964 and I believe they were around well before that. There are still one or two people around who were fitted with glass (ouch) contact lens for KC!
Mike Oliver

Seems to me that however treatment or management of KC is dealt with, we will never be cost effective. That means we will be towards the back of most queues when it comes to funding. I accept the arguments over what the various tiers of the NHS will see as economic, but I also accept Ali's comment t...