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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

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Peter Stephenson
Newbie
Newbie
Posts: 5
Joined: Wed 31 May 2006 10:43 pm
Location: South Shields, North East

Hello!!

Postby Peter Stephenson » Wed 31 May 2006 11:43 pm

Ok this is my first post I hope its ok!! It is such a relief to find so many KC members as myself. I have tried to understand my condition since I was 13 so after 11 years its wonderful to finally meet so many people such as myself. Nobody I know has ever heard of this so finding this website has made me soo happy! Thank You!!! :D :D :o
Where on a road to nowhere come on inside!!

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Louise Pembroke
Champion
Champion
Posts: 1482
Joined: Sat 21 Aug 2004 11:34 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Postby Louise Pembroke » Thu 01 Jun 2006 1:00 am

Welcome Peter!
I was 14 when I was diagnosed and I too wish the site had been around. It's such an invaluable source of information and support.
How is your KC now, you wearing lenses, how is your sight?

Lou
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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Alison Fisher
Forum Stalwart
Forum Stalwart
Posts: 334
Joined: Sat 18 Mar 2006 12:56 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Leicester

Postby Alison Fisher » Thu 01 Jun 2006 1:06 am

Hi Peter. :D

It's a fantastic feeling to find people who share a problem that those lucky enough not to can never truly understand isn't it?

If that came out sounding like a right old load of gobble-de-gook can I blame it on the late hour? :D :P
grafts in 1992 and 1996

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GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Thu 01 Jun 2006 7:37 am

Welcome,

I've had KC for nearly 20 years and since being on this site I have made many friends and met some of them too.

It is a good social group we have here with new regional groups wanting to start up too.

Regards

Gareth
Gareth

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Peter Stephenson
Newbie
Newbie
Posts: 5
Joined: Wed 31 May 2006 10:43 pm
Location: South Shields, North East

Postby Peter Stephenson » Thu 01 Jun 2006 12:44 pm

Thank You!!

My sight is ok its hard to explain to people (but I guess you all know that!!) My right eye has very blurred vision I can just about make out the top letter on an eye chart whilst my left is pretty clear at the moment (second to bottom line at mo!)I did have a gas permeable contact for my right eye but it didnt agree with me so I stopped wearing it. I get by using my left eye at the moment but may need glasses soon.

How about you all?Did any of you experience more loss in one eye or did they both go together?

Oh and Alison that made perfect sense!!
Where on a road to nowhere come on inside!!

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Louise Pembroke
Champion
Champion
Posts: 1482
Joined: Sat 21 Aug 2004 11:34 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Postby Louise Pembroke » Thu 01 Jun 2006 1:54 pm

For me one got worse before the other, that's common. Have you tried a sceleral lens in the right eye?
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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Peter Stephenson
Newbie
Newbie
Posts: 5
Joined: Wed 31 May 2006 10:43 pm
Location: South Shields, North East

Postby Peter Stephenson » Thu 01 Jun 2006 5:11 pm

For a long time I tried to just ignore that I had KC it has only been recently that I have looked into what it is. I am afraid I dont know what a sceleral lens is?

I have just followed the advice of my opto until recently!What is the difference between lenses? The problem with my hard lens was it was uncomfortable and didnt improve my sight enough to warrant the irritation.
Where on a road to nowhere come on inside!!

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Louise Pembroke
Champion
Champion
Posts: 1482
Joined: Sat 21 Aug 2004 11:34 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Postby Louise Pembroke » Thu 01 Jun 2006 5:33 pm

A scleral covers the whole of the eye, there are many scleral wearers on this forum who could tell you more...guys & girls?
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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GarethB
Ambassador
Ambassador
Posts: 4916
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Postby GarethB » Thu 01 Jun 2006 7:00 pm

This will help with understanding Contact Lenses for KC

This is What is KC

If you are a student, this will help Student Leaflet also available as a PDF.

Or if you are at work, then the Employers Leaflet might be useful.

Hope this helps.

Gareth
Gareth

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Hamid
Newbie
Newbie
Posts: 4
Joined: Fri 02 Jun 2006 11:24 am
Location: Pakistan

Hello Peter, Lousie and everyone

Postby Hamid » Fri 02 Jun 2006 12:25 pm

I am also a new member of this useful site like you. from ur post i came to know that you are having KC since the age of 13 so you are much experienced with this problem then me as i was diagnosed only 3 years back and now on the way to adapt to GP lenses which has become a problem for me !

look forward to share feelings and know about ur condition as a source of giodance and relief

Take care
Hamid


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