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by Anne Klepacz
Mon 24 Jun 2019 9:54 am
Forum: General Discussion Forum
Topic: Run in families
Replies: 2
Views: 43

Re: Run in families

There are some families with more than one family member with KC, but they are the minority. Most KC is 'random' with no one else in the family being affected. About 13% of cases involve other family members, though KC can skip generations and it takes several different genes to come together for KC...
by Anne Klepacz
Mon 24 Jun 2019 9:41 am
Forum: General Discussion Forum
Topic: Hypotony
Replies: 2
Views: 29

Re: Hypotony

In all the years of the forum, I can't remember anyone reporting their introcular pressure being too low after a graft. What does sometimes happen is that IOP rises after a graft because some people have that reaction to the steroid drops that we all have to use for a while after a graft. It's somet...
by Anne Klepacz
Tue 28 May 2019 10:23 am
Forum: General Discussion Forum
Topic: Anyone had stem cell transplant then cornea graph ?
Replies: 1
Views: 486

Re: Anyone had stem cell transplant then cornea graph ?

I hope this doesn't prove to be a set back for you. Stem cell treatment is very exciting, but it's not something that's offered for keratoconus as far as I know. Our condition is when the cornea thins and bulges out affecting the vision, but it doesn't involve the sort of damage that you experienced...
by Anne Klepacz
Mon 20 May 2019 2:50 pm
Forum: General Discussion Forum
Topic: Crosslinking
Replies: 2
Views: 138

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: 202

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: 202

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: 202

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: 2
Views: 130

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: 175

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: 126

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.

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