UK Keratoconus Self-Help and Support Association

Hi, iv had keratoconus for over 15 years and been using RGP contacts for the last 10 years under the NHS. My vision is ok in them but they are extremely uncomfortable, I suffer with constant dry eye despite using drops and I can not see through glasses so am wearing the contacts far too much.

I'm looking for a second opinion treatment wise. The NHS say I'm past having cross linking. My issue is that I'm a carer for my disabled son and need my vision and I can not imagine wearing contacts for another 20+ years.

Any recommendations for private clinics near Buckinghamshire?

Iv seen clinics advertised that claim they're the best but would prefer personal recommemdations.
Thank you

Hello Mrs T and welcome. Were you told why you were 'past' having crosslinking? Was it because your corneas were too thin or had scarring, or was it on the grounds of age? And is your KC still changing so that you have changes in prescription, or has it stabilised? I ask because, while a private clinic will probably be happy to offer you crosslinking if age was the only barrier on the NHS, you'd still be almost certain to need contact lenses after crosslinking - it stops KC getting any worse, but sadly doesn't turn the clock back to pre KC vision. Are you getting your contact lenses from a hospital eye clinic? There's a much wider range of contact lenses for KC than there used to be even 5 years ago, but not all hospitals will have the full range. So one thing to consider is getting a referral to one of the major hospitals to see if different lenses would make life easier. And if you can, do come along to our members' meeting on 19th March when one of the principal optometrists at Moorfields will be talking to us about current treatments for KC. You'll find details on the events ticker on our home page. https://www.keratoconus-group.org.uk/in ... r-meeting/

Thank you for the welcome.
I'm seen at a Bucks hospital and have been under their care since diagnosis, they started doing cross linking surgery a year ago and said I'm not suitable as it wouldn't give me better eyesight and dont see it benefiting me as it should stop progressing soon given my age
They literally see themselves as there to give me new contacts each year, they don't do the graphs to check my actual eyes, just give me a new prescription yearly.

I'd actually be willing to have other treatments other than the x linking if it would give me better eye sight.

MrsT23 wrote:My vision is ok in them but they are extremely uncomfortable

Contact lenses shouldn't be uncomfortable so it would be worth asking to try one of the many different types available. On the keratoconus group website there is a link to conference and speaker meeting videos where you can find out more about keratoconus.

https://www.keratoconus-group.org.uk/in ... ce-videos/

In particular there is a video "More than just a pair of eyes" which describes the different type of contact lenses.

Wearing a soft specialist keratoconus lens might be more comfortable. Some people find that the vision is not as good as an RGP but the additional comfort is worth it. Alternatively it might be possible to piggy back your current contact lenses with a soft disposable lens. There are even lenses with a soft skirt and an RGP centre which are designed to give the comfort of a soft lens and the vision of an RGP.

Another thing you could do is consider how you wear your lenses.
For example wearing one lens at a time. I know of one person who wears her left lens one day and the right the next. She said that although it was strange to wear only one lens at a time at first, but her brain now copes with it and each eye gets a day's rest.

It might also be worth seeing if you could get some vision with glasses. I thought for years that I couldn't get any useful vision with glasses but found that I could get some vision. To get an optimum prescription does take time, the optician I see allows a longer time for my appointment. If you haven't worn glasses for some time, especially even if you are very short sighted, it can take time for the brain to ajust to seeing through glasses.

Lia