Newbie to KC

General forum for the UK Keratoconus and self-help group members.

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shoayb
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Newbie to KC

Postby shoayb » Sun 19 Dec 2004 3:34 pm

Hi Guys, I'm from Uk and have recently been told i have KC. I have been referred to hospital and am awaiting an appt (NHS at it;s best! :twisted: )....
i'm only 23... from what i've read here and other sites... probably at the ear;y stages of KC though the optician was not sure how bad it is hence referring me...
I would gladly welcome any advice and tips people may have to share...
I think this is a fantastic site and "pat on the backs" to the people who pulled it together..! :D
P.S. i'm a constant PC user and sit infront of a VDU for a good 9-12 hours a day(ALL clean stuff! :P )... could this have been a cause?!?! will it advance KC any quicker?!?!
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GarethB
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Keratoconus: Yes, I have KC
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Postby GarethB » Mon 20 Dec 2004 9:33 am

Welcome to the forum,

The cause of KC is not exactly known, so the fact that you are a long term PC user will not be the cause. KC is usually diagnosed in teenagers, but as technology improves, KC would appear to be diagnosed more and more. Due to its progressive nature, it may be slight for many years, so you do not know you have it and then it changes suddenly which is when the KC is diagnosed. It can and often stabalises indefinitly. All our cases are unique. I have had KC for 20 years and it was stable for the last 18, but six months ago it changed, but is now stable again.

Some slight cases of KC are fixed with glasses, others use RGP lenses or sclerals, details of which are on this site.

My adice which is easier said than done, is make the best of it and be patient. A positive attituded helps and chating on this forum does too.

Good luck and Merry Christmas

Gareth
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shoayb
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Postby shoayb » Mon 20 Dec 2004 3:23 pm

Hi Gareth, Well thanks for your reply....
I intend to visit this site regularly...As for the uniqueness of each case, it seems to be evident as i surfed through many websites and this seemed to be common on all!
i was told it may be genetically passed, so am trying to find out medical history of a very Big family..!
As for going undetected... never had glasses or anything.. but in the last 6 months or so...eyesight started to get funny.. hence the test which showed the results!
Just got letter through saying the Consultant is reviewing my case and that they will send the appt soon!
Anyone else have any suggestions... please do let me know!
P.S. anyone considered private treatment?!compared with NHS pros-cons(apart from bein a CON!)
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John Smith
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Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
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Postby John Smith » Mon 20 Dec 2004 9:14 pm

Hi shoayb, welcome to the forum.

As it happens, I've experienced both the private and NHS ways, as I was lucky enough for my company-provided medical insurance to cover the cost of a corneal graft privately. I'm also going to Moorfields as an NHS patient for scleral lenses (private insurance won't cover contact lenses of any flavour).

I've found the level of care under both regimes to be comparable. Private care has the advantage of less waiting. Not all private hospitals are equal though - I'm also visiting my private consultant at an NHS hospital because they have equipment there that the local private hospital doesn't!
John
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shoayb
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Postby shoayb » Tue 21 Dec 2004 11:21 am

hi,
thanks for that.... would you advise me to get get an eye topography exact corneal measurement privately?! co'z im still waiting for my hosp appt!
don't suppose you could tell me any costs?!
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John Smith
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Keratoconus: Yes, I have KC
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Location: Sidcup, Kent

Postby John Smith » Tue 21 Dec 2004 7:47 pm

Ah... in my case, the corneal topography machine was the one that the NHS had and the private hospital didn't!

In terms of costs, expect to pay around the £100 mark per consultation. You'll need a referral from your GP too.
John
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shoayb
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Postby shoayb » Wed 22 Dec 2004 1:00 pm

Well £100.00 per consultation :twisted: ..... ! As my fellow students will agree... money like that is hard to come by!
Guess i'll have to wait for the hosp appt to come through! :evil:
My eyes are stinging today.. a burning sensation! more in the left eye than the other.. and i know the lefts worser than the right!
welll... fight on, We do!
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"
"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
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GarethB
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Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Wed 22 Dec 2004 1:17 pm

Several people here use eye drops toaid comfor with contact lenses and general eye discomfort. The popular one is Minims which is available over the counter or on prescription from your GP which is cheaper.

Is use Blink contact eye drops made by AMO, they are in a greenish box from Boots at under £5 for a bottle. These really help me regardless of wearing contacts or not.

My personal view is most of the eye pain is from the sheer effort of trying to see through the fog!

Hope this helps.

Gareth
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shoayb
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Postby shoayb » Thu 23 Dec 2004 11:01 am

Thanks Gaz, i'm gonna look into these drops and get them if it's not gonna be anythin that'll harm ma eyes!
i'm glad i found this site... really helpin me to balance things!
Wispec!
"Snowflakes are one of Nature's most fragile things, but just look at what they can do when they stick together!"

"Tell me and i'll forget, show me, and i may not remember, involve me, and i'll understand!"
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kate farminer
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cause?

Postby kate farminer » Sat 01 Jan 2005 11:15 pm

Hi
I have read that KC is more common in those with skin difficulties, and has different incidence in different races so it seems the predisposition is in the gens, or a problem with a metabolic pathway? From what Ive read I dont think its caused by the things you do.

I was told that its linked to eye-rubbing and that my son has always rubbed his eyes so that was a likely cause - NONSENSE! He has always rubbed his eyes because his eyes and the skin around them has always been very reactive... so obviously KC sufferers would have a high record of eyerubbing.

do what you need to do, feel no guilt!!
Kate
kate f
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