UK Keratoconus Self-Help and Support Association

Hey. I am new here and from australia. I would really appreciatte it if we dont mention the ashes, as I really have not gotten over the loss yet.

I have had KC for nearly 20 years, and am 10 years post my first graft and 9 post my second. My younger sister also has KC and has had bilaterals. I have also just been told my daughter looks like she has it. She is 4. She has not been diagnosed, but the "gut" instinct of her pediatric opthalmologist was early KC. Cant get much earlier I guess. She also seems to have a lazy eye, so we are going to work on that then worry about the rest. Something can at least be done about that.

I am glad to find this forum as it seems quite active, and as an Aussie I feel more like the British than I do Americans.

KC at four I think is unheard off as most of us get diagnosed in our teens. If you are concerned rather than a paediatrician, an opthalmologist may be better placed for a diagnoses.

At 18 months I was told my daughter would need an operation for her hearing. We went to see a specialist rather than the paediatrician and said there was nothing wrong, just a bit of wax. She is now a health and lively six year old.

Really hope it is a false alarm.

Hello Prue, and welcome to the forum.

It's a weird coincidence that you've posted now, because at our social yesterday, we were discussing the lack of people posting who have siblings with KC - and noone had come across anyone with children with KC... And here you are!

I really hope that your daughter doesn't have KC. That is such a young age to be so afflicted.

Not that I'm trying to get rid of you at all, but have you visited our friends at Keratoconus Australia?
They'd be able to provide some localised help, especially if you're in Victoria!

Yeah I have been on there mailing list for 3 years now. I actually took her to a pediatric opthalmologist. So she is an opthalmologist who also did pediatrics. She actually did her peds in England and opthal in Australia. My opthal was her mentor.
I must admit I was very impressed with how quickly she determined their spectacle prescription. It was all done looking through lens into the eye (after dilating drops) I figure it might get a bit frustrating getting young children to read charts. She got the keratometer out for Catherine, and we were there for half an hour. She is working on the lazy right eye at the moment we can treat that. Otherwise it is a wait and see approach with the KC. Time will tell, and she has plenty of time.
I realise 4 is almost unheard of, if not unheard ofand as I said she has not been diagnosed, it is more the signs she have are consistent with KC and rare in children, and she has a strong familial history.
Apparently in the US it is quite comman for family members to suffer from KC, but in Australia it is actually extremely rare. We are the only ones my opthalmologist has met. A proffessor at the school of Optometry at Melbourne Uni told my sister we were one in millions, he also had not met siblings.
As I mentioned earlier I became a member of Australian KC group a few years ago, but unfortunatley they do not have an active message board and I am 3 hours out of Melbourne. This means i have been unable to go to any of their social functions so far due mainly to work and family commitments. This is the reason I joined this board. I have always felt a bit more British than American and this board is active.

Hi Prue,

Don't worry about being from down under. You are very welcome here. We actually have quite close ties with Keratoconus Australia (we share a committee member!) and I just wanted to make sure that you were aware of the local support group.

We do have posters here from all over the world, and it is nice sometimes to see non-UK posters because we can learn of other treatments etc. which we are unaware of!

All the best,

Thanks John

I appreciatte it. It is good to know we are not alone. No body who does not live with it can understand what we go through. It is not all bad but its not all good either.

Hey Prue

In Scotland we don't bang on about the ashes; never had them!

Wales beat us at Rugby yesterday.

Good to know you

A

I am a Victorian so I am an Aussie Rules girl through and through, but my Hubby is into Rugby, and Soccer (Football).

My wife likes Aussie rules, she says its because they wear tighter shorts

When I was at University a group of us was challenged to play an "ausie rules" "friendly".

Two things.

1 the game was far from friendly
2 there did not seem to be any rules

We did not win.