UK Keratoconus Self-Help and Support Association

Good afternoon could anyone give me any options available for someone with advanced KC. I was not suitsble for CXL a few years back roughly 6years I think. I feel at an absolute loss at the moment with a huge backlog at the clinic I attend I am not quite sure when I'll get seen again. I feel my eyes getting worse thankfully I have been able to get an appointment with a local optometrist. I can still drive and that is main fear that I will get beyond the legal border.forgot to mention I currently have rgps.

Sam

Hi Samuel,

You might find it useful to look at some of the presentations from one of the Keratoconus Groups Conferences.

The link to the conference videos can be found at:

https://www.keratoconus-group.org.uk/in ... lications/

https://www.youtube.com/channel/UC5JjXE ... 8mA/videos

In particular I would recommend that you view:

KC Conference 2018 - 3-Waheeda Illahi
In this presentation Whaeeda talks about the different types of contact lenses and how to get the best out of a contact lens appointment.

and

KC Conference 2018 - 2 Amit Patel

Lia

Samuel,

It is not uncommon for those how have not had CXL for the Keratoconus to progress to the point where rgps are no longer able to provide satisfactory vision.

Symptoms might be:
-increased discomfort wearing lenses
-shorter wearing time
-lenses dropping/flicking out
-frequent changes of fit required
-increased multiple images

If you are getting some of these symptoms it is probably time to discuss moving yo a different lens.

Not all clinics and eye departments in general hospitals (in the UK) have the expertise to fit and supply all the lens options you might see in the videos. You can ask to be transferred to one of the specialist eye hospitals. You can sometimes get ti's arranged if you go back to your GP for a new referral.

Certainly not the time to think you have got to the end of the road with lenses.

Graham

Hi,i have just joined the forum,i have advanced KC in both eyes,worse in my right with scarring,i had to move from RGP 5 years ago,i now wear mini sclerals in both eyes,They are very comfortable(takes a while to get used to putting them in though).
The mini sclerals are good in windy,dusty conditions.The downside for me is i now have permanent GPC .I receive steriod injections in each eyelid every 6 months to smooth out the lumps.
I was given them through the NHS and would recommend trying mini sclerals if you are struggling with RGPs.

Samuel1988 wrote:Good afternoon could anyone give me any options available for someone with advanced KC. I was not suitsble for CXL a few years back roughly 6years I think. I feel at an absolute loss at the moment with a huge backlog at the clinic I attend I am not quite sure when I'll get seen again. I feel my eyes getting worse thankfully I have been able to get an appointment with a local optometrist. I can still drive and that is main fear that I will get beyond the legal border.forgot to mention I currently have rgps.

Sam

Hi Sam do you get your corneas scanned at your appointments to see if the KC is stable?

As you're on RGPs there is still a way to go on lenses (as others have said), you might find some much better. I was at a worse stage 17 years ago(one eye only) and only in the last few years have I been able to see much at all out of my bad one. The pace of development right now is unbelievable. So please don't lose faith.