UK Keratoconus Self-Help and Support Association

Good evening.

This is my first post here, but I have suffered with KC for just over 10 years now. in the early stages I went through all of the hospital checks and was pushed back and forth between various places for tests, but the only options on the table were grp lenses which i trialed for over 2 years in extream discomfort.

In the end enough was enough for me so I decided that I would try and get the best vision possible with glasses and stick to that which generally has been fine up until the past few months where I am really finding it hard to focus on smaller items such as text whilst at work.

A couple of weeks ago I decided to book my self in for an up to date eye test and as suspected my KC has got a little worse to the point that specs are unable to give me the crisp sight that i'm missing at present.

My opticians have been really good and suggested trying contacts again - as I cant go on with my specs I agreed to trial lenses which I have again started. The trials with soft and doubled lenses are not working well. Although the comfort is great the actual vision is really poor.

I asked if it would be possible to use a soft lens with hard middle for comfort and then wear glasses on top to get as best as possible but it seems that we cant get to a comfortable meet between the two points.

Its been suggested that I could try a specialist lens but they come at £600 per pair and the chances are they would only last for 6 months before requiring replacing.

I have been reading about scleral lenses too but dont know if they would be any help or not?

I really dont to go back through the hospital stuff again as I hated it plus the discomfort, however £1200 per year privately is for me quite alot.

Does anyone know if its still possible to go through NHS for fitting/lenses and possibly then use the funding to go back to personal optician?

Would really appreciate any thoughts or experiances if anyone has been in a similar situation please?

Thanks very much, - Im going to specnd the evening reading through posts here to see if their are any other similar topics.

hi I am in the process of having scleral lenses fitted on the nhs they seem very good but with appointments 6 to 8 weeks apart it is taking a long time went yesterday but still have to been an alteration to the fitting.

Hi Sparkyaj,

There are lots of different types of contact lenses for keratoconus but what suits one person doesn't suit another.

Typically early keratoconus can be corrected by glasses or soft contact lenses. As progression occurs more specialist lenses are required such as a specialist soft lens (eg Kerasoft) or a corneal RGP (eg Rose K). And just because one specialist soft or RGP design doesn't work for you another may. If these lenses don't work piggy backing (RGP on top of a soft lens) or hybrid lenses (RGP centre with a soft outer edge) may be tried. After this comes the corneo-scleral lens, and there are now quite a few of these lens designs around, and finally the scleral lens itself.

However it is not just the design of the lens that is important but you also need to see someone who has a range of lenses available to them and the skills to fit them. One of the reasons that specialist lenses are so expensive is not just the cost of the lens but also the chair time involved to fit the lenses. It isn't unusual to go back to the optician several times to getting the lens fitting correct and your vision optimised.

sparkyaj wrote:Does anyone know if its still possible to go through NHS for fitting/lenses and possibly then use the funding to go back to personal optician?

I've not heard of anyone doing this.

Most people I have met with KC either have their lenses fitted by a hospital contact lens department or have been referred from a hospital eye department to a High Street optician who does fit KC patients. A few others have gone privately to opticians who specialise in complex fittings and consequently their lenses have been expensive but they do feel that their vision has been optimised.


Lia