KC people living in Scotland

[Clayurr]

Hi,
I'm Claire, I'm 30 from Motherwell. I have been diagnosed with KC for about 5 years now.
Have been prescribed a RPG lens since then, that I've found very difficult to use and must admit I just stop wearing it.
I'm being referred to "speak seriously" about a graft since I have such trouble with the lens due to shape and dryness.
Get on fine with my right and and feel like its starting to go but topography hasn't changed in 6 months.

Just wanted to pop in say hi and introduce myself. I've read stories and information this site for a few years now.

[Lia Williams]

Hi Claire,

Welcome to the forum.

There are lots of different types of lenses for KC these days. In addition to RGPs (and there are lots of different designs for RGPs) there are also specialist soft lenses, mini scleral and scleral lenses so it may be worth asking if there are any other lenses you could try.

Lia

[Clayurr]

I have an appointment in Gartnavel next week so I'll ask.
I think it just being one eye doesn't help either

[james mckinlay]

Hi claiurr welcome to the forum good luck with your appointment I've had KC for about 20 years an had grafts I'm both eyes. Hope you can find a solution with a lens for yourself that can make a huge difference to you.

[Nick_Planner]

Hi all , I am Nick ,

I am living in Glasgow - I have had (read: known I have) KC for about 9 years now. Originally treated in Dundee , but I am now in the process of transferring to Gartnavel. I have been fairly stable for a year or so and still managing to survive with glasses, but I am having a downward spiral again, which is frustrating.

I am actually trying to find an Opticians in Glasgow at the moment, one that has some experience with KC, I had a good optician , but sadly they have changed their charging structure , which makes it unaffordable now. If anyone has any local suggestions , I would be really grateful for a PM.

Thanks ,
Nick

[JillyG15]

Hello - looking for advice.  my son (22 years old) has progressive keratoconus.  He was diagnosed a year and a half ago after he assumed he had 'perfect' vision.  One eye is I so bad that it is too late for cross link.  His 'good' eye had to have cross link 4 weeks ago as it has deteriorated.  I was wondering if you know of any help and assistance available in Scotland in relation to psychological supports. His GP is keen to refer him and asked me to find out if any available as my son is not coping with his current vision loss and is extremely depressed. His consultant said that a corneal transplant for his right eye is almost definite.  His cross link so far looks successful but they will know for sure in June.  His ophthalmologist is hoping that he will have a level of vision with special larger hard lenses if he can adapt and tolerate them in June/July.
he struggled to cope with the last hard lens he had for his ‘bad’ eye as it kept popping out and irritated his eye.  Since he was diagnosed he has been travelling Australia (as a year out had already been his plan) he coped with just a prescription glass for one eye on his glasses (other eye too badly advanced for glasses).
He was previously very active playing golf, sports  travelling until February this year when he had to fly home due to his vision deterioration that it has affected his confidence badly.  He feels that he only sees ‘old’ people at his hospital and I’m wondering if anyone on here is of a similar age or any tips / advice that would help him at this time.

Thanks in advance

[indium]

Hi there
I was diganosed with KC when I was 21 and it was not an issue until about 5 years ago (I'm 42 now). I now have sceral contacts from the contact lens clinic at Gartnavel- who are brilliant- and the only issue I have now is that I am forever losing them and them I'm functionallintg monocualrly for 2 weeks until they can get me a new one. Oh and I've been told not to wear them for so long which is a problem as I can't really function without them now!
I spose there is also the fact that I live 3 hours away and my local A&E has no opthalmic cover, which has resulted in a 3 hour drive to glasgow when I had an eye infection.

For anyone who has problems with hard lenses- sceral ones are SO much more comfortable and stable, admittedly they can be a faff to put in and take out until you get used to them. If your optometrist will give you Fusion eye drops, I find they really help with the putting in and the comfort while wearing. I can honestly forget I have lenses in now, and I could never do that with the smaller ones.

JillyG15- I know what you son means about only seeing old people at the hospital- an opthamologist once said to me that it was a treat to see a young paitent in her clinc, which made me feel about 20 years younger than I am!
I'm not sure where you are in Scotland but usually there's no waiting time at the Gartnavel contact lens clinic so I rarely see the 'old people' ques there!
I had the same issue as your son with the hard lens 'popping' out ( in my bad right eye) and irrirating ( in the left eye) but once I got the sceral ones ( which I think are the larger ones you refer to) it was sooo much better.

[NGEh]

regarding sceral lenses, did it cost you a lot to switch over to them? How do you find them for falling out?