Update

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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Tracey Burt
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Location: Brighton

Update

Postby Tracey Burt » Sun 11 Jul 2004 9:20 pm

Well I went for my new lens fitting on Friday and they found some lenses suitable for both eyes after four attempts at using some others. I am off for my teaching session next week when I get my kit bag of goodies (as the dr put it). I'm not sure how I will get on with them though as since Friday my eyes have been increasingly sensitive to light and tiredness and I'm hoping its just where my eyes were not used to trialling the other lenses. I have KC in both eyes one far worse than the other and also have distorted light reflexes. The dr also said I had something which I cant remember what its called now but its where I look down and then something goes towards the eye and I just cant carry on looking down. (I think thats a natural reflex but I was told otherwise - any suggestions ?). What are the best steps to getting used to the lenses ? and help with sensitive eyes etc.
They "think" there maybe a link to me having KC and being 29 and also hitting the menopause, having polycystic ovaries and developing a sugar deficiency (not diabetes I or II). Would be interested to hear of your views on that should anyone know.

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Susan Mason
Forum Stalwart
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Posts: 414
Joined: Sat 24 Jan 2004 11:27 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Bolton Lancashire

Postby Susan Mason » Mon 12 Jul 2004 9:12 pm

i had my first child @ 29, started having vision problems 10 months later, although no suggestion made re KC, fell pregnant again Feb 2000, miscarried end May00 by which stage my eyes were being troublesome...after long wait was finally seen by hosp in nov00 & diagnosed with KC! by this stage i was 32 & they were surprised that i was so old(!).....i too have read that some hormone present at puberty r also repesent during pregnancy & sometimes wonder whether there is any connection.......i've also been told that it is possible 4 u 2 have KC & not really be affected other than being a difficult prescription @ opticians! The NHS dont seeem to know much about KC & whilst my curent optometrist is very good, in a 20 min appt slot, frought with lenses, saline & solutions, there isn't much time to hae anything confirmed!

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John Smith
Moderator
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Posts: 1941
Joined: Thu 08 Jan 2004 12:48 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles
Location: Sidcup, Kent

Postby John Smith » Mon 12 Jul 2004 11:19 pm

Hi Susan,

You are of course correct that most people don't have any real problem with their KC. To a lot of people, it's just a long word that they occassionally hear in the opticians; occasionally it's something that makes the optician suggest contact lenses rather than glasses.

Unfortunately, there are also those of us who need more help than that - to us, KC is a way of life. Because there's not that many of us in that boat, many opticians (NHS or otherwise) simply don't come across cases like ours. I was lucky that I found an optician who treated me as an interesting case; sure, I was used as a demonstrator to help train the more junior opticians, but I was pleased to help.
John

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Susan Mason
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Posts: 414
Joined: Sat 24 Jan 2004 11:27 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Bolton Lancashire

Postby Susan Mason » Sat 17 Jul 2004 11:59 pm

Thanks for your comments & reply John,

I think I am now in the KC way of life club. Each day is full of challenges (the nice way to put it) and anything can happen or go off plan at any time, or so it feels at present. My KC very quickly moved from glasses to RGP contacts which after 9 months of trying with one eye for 4 hours a day then moved on to RGP scleral lenses. After the initial 6 months of bubbles and associated issues things seemed to settle down and I thought I had it cracked. However,it was not to be and in Apr this year, just 11 months after getting the sclerals my left eye started to change shape and now I am trying to get used to a new lens.
Since May my employers have lost he plot with me and are now suggesting that I need to take a down grading and a pay cut as I (THEY FEEL) am no longer fit to do my job. It seems after 12 months of working with 1 or no lens for them (whilst they were short staffed) they now feel I am a H&S risk and am too unpredictable So far everything has been very loosely worded and nothing official however since seeing my GP at the begining of June I am now off sick with what he feels is 'reactive deoression'. Sometimes I wonder if it will ever be any easier an find it frustrating that the NHS seem to have so little time or knowledge of this illness which basically in the last 2 years has tipped my whole life upside down.
I am hoping that when the KC group get some info for employers this will help in the meantime I am trying to persevere with the new lens until my next appointment (they don't even ask my name any more) however an finding I have little motivation this time, after being told on several occassions that I am not able to do it, my job or that my problems with the companies IT system are because I am in the 2% minority that they don't cater for.

Susan :cry:

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dray
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Joined: Sat 31 Jul 2004 10:13 am
Location: Woking

Postby dray » Sat 31 Jul 2004 11:08 am

Tracey

first off i have never been able to get used to contacts, so i quit them.

Susan

You sound really depressed, i want to take you out make you laugh and get you plastered.
2% the IT dont cater for, heh they are talking shite rnt they, im head of IT for three small companies most of the time my head is about 12 inch's from the screen sometimes 3 inchs the res is 1024 x 768 and i have two flat screens (flat screens are a big help for us KCers make you IT dep get one for you), no one says a thing well occasionaly they joke about it which is fine because i prob would if i was them.
Chin up and carry on being as strong as you are... :D

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Susan Mason
Forum Stalwart
Forum Stalwart
Posts: 414
Joined: Sat 24 Jan 2004 11:27 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Bolton Lancashire

Postby Susan Mason » Sun 15 Aug 2004 2:26 pm

Thanks, Dray for your positive comments. They made me laugh which is a good thing and getting plastered seemed a very good idea, although I may have to do it without my lenses in as I am not sure how good I would handle them after a few drinks!!!

Susan

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GarethB
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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 » Sat 21 Aug 2004 4:06 pm

Hi Susan,

This will make you laugh, when I went to University, I was still waiting for grafts so commenced and enviromental microbiology degree unable to see much at all. I had got to the point where even contacts would not help. Not a common occurance as far as I ma aware.

Have now gone 14 years since the second graft, (one in each eye) and the right has deteriorated but not due to the graft so need to wear contacts again. This has caused my employers a problem as I work in a laboratory and company policy is you can not enter the lab if you have contacts, even with safety glasses!!! This is a health and safety isue as chemicals can still splach behind saftey glasses and the potential is to get trapped behind the contact lens. I can not be down graded as this amount to discrimination, so your emplyers should be very careful.

I would liken the situation to being a policewoman and being pregnant. They are not expected to chase criminals so do desk duties and are not downgraded as they can not do the original job.

Hang in there, and getting drunk used to improve my sight!!!! Scientific fact, causes dehydration of fluid behind the cornea so the cuvature comes back slightly!!!!! Many a drunken night in the student bar prooving the concept!

Regards

Gareth


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