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by Anne Klepacz
Thu 01 Feb 2018 10:43 am
Forum: General Discussion Forum
Topic: Fundraising for research into KC
Replies: 3
Views: 512

Re: Fundraising for research into KC

And here is a link to another walker's fundraising page https://www.justgiving.com/fundraising/amy-musto5
Amy has done so much to raise money for our charity - please support her on the Eye to Eye walk.
by Anne Klepacz
Fri 26 Jan 2018 3:15 pm
Forum: General Discussion Forum
Topic: Next London meeting on 17th March
Replies: 7
Views: 651

Re: Next London meeting on 17th March

AGMs have always been in London. But the one day conferences that we organise, usually every 2 years, have been in Birmingham, Glasgow and Manchester as well as in London. This year's conference will be in Birmingham in September - we'll announce more detail once we have it.
by Anne Klepacz
Fri 26 Jan 2018 3:08 pm
Forum: General Discussion Forum
Topic: Diagnosed with Advanced KC at 34 but I feel my vision is functional.
Replies: 5
Views: 456

Re: Diagnosed with Advanced KC at 34 but I feel my vision is functional.

Scleral lenses should be a good option, as they don't touch the cornea so there's no danger of them rubbing an already thin cornea - though not all hospital clinics provide them. I'm puzzled by what you've been told about CXL as the cut off thickness is 400 (and some clinics use drops to temporarily...
by Anne Klepacz
Thu 25 Jan 2018 8:34 pm
Forum: General Discussion Forum
Topic: Back from hospital appointment :(
Replies: 2
Views: 349

Re: Back from hospital appointment :(

When they said surgery, was that crosslinking or a transplant or Intacs? It's good that you've got an urgent referral - I think in earlier posts you were talking about all sorts of delays when you were first diagnosed. Let's hope it is quick this time and that you'll have the chance to ask lots of q...
by Anne Klepacz
Thu 25 Jan 2018 8:28 pm
Forum: General Discussion Forum
Topic: Diagnosed with Advanced KC at 34 but I feel my vision is functional.
Replies: 5
Views: 456

Re: Diagnosed with Advanced KC at 34 but I feel my vision is functional.

You raise a very interesting question, mz1984. I found this definition of the stage of KC http://amkca.org/2012/03/determining-the-stage-of-keratoconus/ where the criteria are the steepness of the cone and the thickness of the cornea. No mention at all of visual acuity! I'm sure there are other defi...
by Anne Klepacz
Tue 23 Jan 2018 2:04 pm
Forum: General Discussion Forum
Topic: Fundraising for research into KC
Replies: 3
Views: 512

Re: Fundraising for research into KC

And if you're unable to walk on the day, do please support our walkers to raise funds. Here is the link to one of our walker's Justgiving page.
http://www.justgiving.com/owner-email/p ... id-GableKC
Let's make sure that KC isn't forgotten.
by Anne Klepacz
Mon 22 Jan 2018 2:31 pm
Forum: General Discussion Forum
Topic: Next London meeting on 17th March
Replies: 7
Views: 651

Next London meeting on 17th March

Our next London meeting will be the AGM on Saturday March 17th at 10.30am in the lecture theatre of the Moorfields Clinical Tutorial Unit which is now located at 15 Ebenezer Street (go up Provost Street which is across the road from the main hospital and you'll find 15 Ebenezer Street on the next co...
by Anne Klepacz
Mon 22 Jan 2018 2:25 pm
Forum: General Discussion Forum
Topic: Fundraising for research into KC
Replies: 3
Views: 512

Fundraising for research into KC

At least two of our members have signed up for the Eye to Eye walk on Sunday 4th March organised by Moorfields Eye Charity to raise money for research. We would love as many as possible of our members who live in or near London to join a keratoconus team on the walk. There is a 4 mile or 14 mile opt...
by Anne Klepacz
Tue 16 Jan 2018 12:12 pm
Forum: General Discussion Forum
Topic: Corneal Haze from Cross-linking
Replies: 21
Views: 11213

Re: Corneal Haze from Cross-linking

Hi Barry and welcome, Have a look at this thread https://www.keratoconus-group.org.uk/forum/viewtopic.php?f=1&t=16404 and many others like it on this forum. People's experience post CXL seems to vary a lot (and on a forum like this, we're more likely to get posts about the negatives than the pos...
by Anne Klepacz
Sat 06 Jan 2018 4:22 pm
Forum: General Discussion Forum
Topic: Keratoconus
Replies: 5
Views: 408

Re: Keratoconus

The hospital website should include a contact number for the PALS team (Patient Advice and Liaison Service). Or ring the hospital and ask to be put through to PALS.
Good luck!

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