UK Keratoconus Self-Help and Support Association

Hi everyone!

This August I was diagnosed with KC in both eyes, although in my right eye it is much earlier and was only picked up on because of the left. I'm nearly 23 and I live and am from Pembrokeshire, where according to my optician they keep diagnosing KC! They can't quite believe it- must be local genetics!

I am in the fairly early stages and am able at this point to correct my vision using soft lenses and specs. I am concerned about moving onto hard lenses, especially as my specialist has told me that I will really struggle with them because I have had difficulty with my soft ones! So I really would like to explore the treatment options avaliable to me so I can hopefully avoid moving onto hard lenses.

He has only told me about cross linking, and by what I've read on this forum this appears to be common for a lot of people. He said it was only avaliable privately and could refer me to someone in Bridgend who does the procedure (has anyone been to bridgend for this?). I have had a quick look online and can't seem to find anyone doing CS there but perhaps im using the wrong search terms. I am prepared to raid the savings if need be if this is the best treatment option for me. Can anyone recomended a good place for treatment?

I have been reading up on Intacs, and think that they maybe the best option for me at the moment. I don't think that there are any other options avaliable to me at this point?

I have an appointment this afternoon with my specialist and will ask him then about this and about possibly getting a referal. Where is the best place to be referred to? Does anyone know what the policy is in Wales on carrying out Intacs on the NHS? Can anyone recomend a hospital in Wales, the South, London. Or is Manchester and the north the best place to get treatment? Moorfield hospital has been recomended to me as the best eye hospital but not specifically for KC.

I'm sorry to bombard you all with all this information and all these questions. Thankyou for any help or advice you can give me,

Sarah

Hi Sarah and welcome to the forum,
The first thing to say is that KC is quite unpredictable in how much it progresses in any individual. It sounds as though it's quite mild at the moment if you can get good vision with soft lenses and specs, and it's possible that you'll stay like that. So maybe at this stage it's a question of seeing whether it does progress before deciding to go for a surgical option. There's also quite a variety of contact lenses for KC these days, including special soft lenses for KC such as Kerasoft, hybrid lenses which are hard in the middle and have a soft skirt, and wearing a hard lens on top of a soft one (piggybacking). So if your KC does progress, the lens option may still be a possibility for you.
As far as crosslinking is concerned, I know there's a consultant in Swansea who does it - not sure whether that's only privately or on the NHS. And I don't know whether he also does Intacs, or whether Intacs are available in any other Welsh hospital. And if you'd like the DVD of our 2007 conference which included talks about crosslinking, Intacs and lens options do e-mail me your postal address and I can send you a copy. anne@keratoconus-group.org.uk
All the best
Anne

Hi Sarah,

Anne has more or less covered everything but I would just like to add a couple of points. cross linking with or without INTACs does not necessarily mean you will not need to wear contact lenses. In fact, in some cases, INTACs can make fitting contact lenses harder not easier. Also, INTACs can work really well for some people and not for others.

Also, you may find wearing normal soft lenses difficult because your corneal shape is not quite normal - after all, that is what having KC means! As there are dedicated soft lenses for KC that are designed to work with the KC cornea, you may find those are easier to wear.

Being newly diagnosed often means you look at absolutely everything trying to find an "answer". With this condition, there is no magic answer that works for everyone, each person is different and indeed for the same person with KC, what works for one eye may not for the other!

Before you leap into anything at all, it is wise to see if you progress over the next few months. Many people can stay stable for years, so sometimes jumping into surgical correction is not the right route.

Lynn

Hi Sarah,
welcome and good luck!