UK Keratoconus Self-Help and Support Association

Hello. It has been suggested that large soft lens might suit my son more than the gas permeable. No name was given - he is seeing someone who specializes in 10 days.
Does anyone have any experience of these type of lens? We are having difficulty in getting a good fit with hard lens.
Many thanks.

Rose

Soft lenses designed for Keratoconus have given good results to some people. It may very well be that your son will benefit from them, also.

The guide here, as with all things concerned with Keratoconus, is that eac of us is different: a solution for one of us will not necessarily suit another.

Every good wish.

Andrew

I have been using Kerasoft soft lenses for about 5 yrs now. They are great when you get the correct fit. Sometimes tho, as my fitter finds out, what he orders can come back slightly different due to the manufacturing process (or so he says).

I'm having problems with slightly sore eyes when I wake up. Which makes using lenses for a good few hours nigh impossible

I'm looking at getting Intacs implants for my eyes.

How old is your son, btw?
Maybe he could consider Collagen Crosslinking, if he's still you and KC progressing?

Thank you Andrew. I think I am beginning to realise how difficult it is to make generalisations about treatments for KC. I had not read too much about about soft lenses being used. As I said I am not sure of the name of the lens suggested but Munster if they are Kerasoft then I am glad to hear that you have a positive experience. I hope we find something soon because my son is getting fed up with not getting a good fit so far. Yes Munster CXL is very much on the cards; we would like to have it sooner rather than later but all professionals seem to want evidence of the progression of the disease before they will treat. I think the fact his cornea was ok in the summer and then very distorted by the end of October shows progression!. My son is 17 yrs BTW. I read somewhere here on this forum that in Sweden they are automatically crosslinking everyone newly diagnosed with KC. A lot of confidence in the treatment there.
I appreciate both your posts - thank you.

Hi Rose

There are many types of soft lenses available and they can be extremely successful, especially when people struggle with RGPs.

The issue of progression or not before cross-linking, in my view, is very much for the patient themselves to decide. It can be suggested that you wait for "progression" but ultimately it is down to you and your son. And as you say, it sounds like he is already showing signs of progression.

Is this through the NHS or privately.

Lynn