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by Anne Klepacz
Mon 20 May 2019 2:50 pm
Forum: General Discussion Forum
Topic: Crosslinking
Replies: 2
Views: 34

Re: Crosslinking

Hello Evonne and welcome. To be eligible for crosslinking on the NHS, there has to be demonstrable progression on corneal topographies done 6 months apart. So I don't think a second opinion or asking your son's GP to refer him to Liverpool would make any difference at this stage, given that he now h...
by Anne Klepacz
Sat 18 May 2019 1:40 pm
Forum: General Discussion Forum
Topic: Which NHS hospitals offer treatment?
Replies: 6
Views: 54

Re: Which NHS hospitals offer treatment?

I agree - it would be great to have such a list. But as far as I know, it doesn't exist. A few years ago, when the KC Group was involved with some corneal consultants in trying to get CXL more widely available, a survey was carried out through the Royal College of Ophthalmologists. But around a quar...
by Anne Klepacz
Thu 16 May 2019 2:55 pm
Forum: General Discussion Forum
Topic: Which NHS hospitals offer treatment?
Replies: 6
Views: 54

Re: Which NHS hospitals offer treatment?

As you probably know, the idea of CXL is to stop keratoconus progressing. It can't be done if the cornea is too thin, so that's probably why you were told it couldn't be done in your daughter's other eye. A corneal transplant is a last resort for KC, involves much more invasive surgery and needs a l...
by Anne Klepacz
Thu 16 May 2019 9:13 am
Forum: General Discussion Forum
Topic: Which NHS hospitals offer treatment?
Replies: 6
Views: 54

Re: Which NHS hospitals offer treatment?

Hello Vivien and welcome. How very frustrating for both of you. Can you tell us what operation your daughter was due to have? Was it collagen crosslinking (CXL) or a corneal transplant?
And whereabouts in the country are you?
by Anne Klepacz
Thu 16 May 2019 9:09 am
Forum: General Discussion Forum
Topic: Stem cell transplant then cornea graph
Replies: 1
Views: 31

Re: Stem cell transplant then cornea graph

Hi Philip, No, you don't have to completely rest for months. How much time you have off work depends on the sort of work you do. Most people take a couple of weeks off work but if the job involves heavy lifting a few more weeks are needed. When I had my grafts, I managed to negotiate a staged return...
by Anne Klepacz
Wed 08 May 2019 9:56 am
Forum: General Discussion Forum
Topic: Deteriorating eyesight and cxl in second eye
Replies: 2
Views: 89

Re: Deteriorating eyesight and cxl in second eye

Hi and welcome, You're asking some difficult questions there as every case of KC is different and there really aren't any hard and fast rules. On progression, CXL isn't offered on the NHS unless there has been a change of at least 1.5 in the KMax reading. But I also asked one of the Moorfields consu...
by Anne Klepacz
Sun 28 Apr 2019 10:37 am
Forum: General Discussion Forum
Topic: Contact lens post graft
Replies: 1
Views: 56

Re: Contact lens post graft

Plus a scleral would vault the cornea and the stitches which must be an advantage. And if you wear a scleral in the other eye, then the two eyes will 'match'. I hope all goes well when you go for the fitting. Do let us know how you get on.
by Anne Klepacz
Mon 22 Apr 2019 3:07 pm
Forum: General Discussion Forum
Topic: Crosslinking & Pregnancy
Replies: 8
Views: 381

Re: Crosslinking & Pregnancy

Yes, crosslinking is available on the NHS, though not all hospitals in the UK offer it yet. If the hospital you go to doesn't, then they should be able to refer you to another hospital that does. For crosslinking to be provided on the NHS, there has to be evidence of progression from scans done 6 mo...
by Anne Klepacz
Wed 17 Apr 2019 4:13 pm
Forum: General Discussion Forum
Topic: Crosslinking on good eye.
Replies: 6
Views: 270

Re: Crosslinking on good eye.

We're all different so who knows what is 'normal'? But we can share experiences even if we may all react in different ways. Many years ago now, I had a time when I couldn't wear lenses (post graft surgery) and the prescription was very different in each eye. The hospital gave me some glasses, saying...
by Anne Klepacz
Tue 16 Apr 2019 11:20 am
Forum: General Discussion Forum
Topic: Crosslinking & Pregnancy
Replies: 8
Views: 381

Re: Crosslinking & Pregnancy

There's an interesting article on this topic on the American KC website https://www.nkcf.org/pregnancy-crosslinking/ And this on the Light for Sight website https://lightforsight.org/wp-content/uploads/2016/12/02-Bohac.pptx.pdf While it seems like not all pregnant women experience progression of KC,...

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