Hi Johanna,
Sorry to hear that you have KC but you have done the right thing to join this forum. I didn't join up until after I'd had a graft and I've been astonished at how much I've learnt about the condition that I hadn't found out from the medics treating me. If I'd been here first I'd have been much better informed when making the decision to have surgery. I was diagnosed when I was 28 years old but most likely I had the condition since my late teens when I first noticed my sight deteriorating. I was offered surgery after a period of particularly bad problems with my eyes which was most likely due to my being cared for by an optom outwith of the hospital system and my having absolutely no idea what the condition was about. At the time I was a competitive triathlete and didn't want to have any time out of training so I carried on with lenses and with better care within the hospital I was able to manage for years. Hopefully you'll get some good treatment and you may never reach the point where surgery is needed.
All the best,
Jack
Question from a newly diagnosed
Moderators: Anne Klepacz, John Smith, Sweet
I was diagnosed in December after rejection from a laser eye clinic. I've worn glasses for 20 years for what I thought was astigmatism - none of my optoms even noticed that I had KC - or at least they didn't bother to tell me.
Mine is very mild - I have managed perfectly well with glasses for 20 years. But now I am doing a lot of training in the gym and would prefer not to wear glasses so I am giving contacts a go as I can't have laser treatment.
Like you I was terrified when I first saw this site & first understood what KC could mean. But I have since been reassured by my optoms that in my case at least it probably won't come to surgery. The contacts are working well and life is looking good.
Mine is very mild - I have managed perfectly well with glasses for 20 years. But now I am doing a lot of training in the gym and would prefer not to wear glasses so I am giving contacts a go as I can't have laser treatment.
Like you I was terrified when I first saw this site & first understood what KC could mean. But I have since been reassured by my optoms that in my case at least it probably won't come to surgery. The contacts are working well and life is looking good.
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John Smith
- Moderator
- Posts: 1941
- Joined: Thu 08 Jan 2004 12:48 am
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and spectacles
- Location: Sidcup, Kent
i found this forum excellent aswell,full of supportive people,dont worry about it i belvie i have the worst kerataconus on here muhahaha as without my lenses i couldnt see somebody standing right infront of me properly, i have hit and miss days with my lenses somedays ill have em in allday with no problems,otherdays theyll be in for 30 mins and really irritate me but ive got to live with it,im 21 now hopefully ill get by with my lenses for years to come altho i only wear a lens in my right eye as it really irritates me with it in both eyes and my left eye isnt as bad as my right, i iwsh i could wear glasses like you but they do nothing for my eyes
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Stokie,
In December 2005 I could not wear lenses for more than two hours and without them I am legally blind!
After much discussion I asked the hospital to look at the quality of my tears and they were found not to be the best but in the realms of what they would consider normal. I then spent about 3 months finding eye drops that worked and eventually found Systane by Alcon best for me giving two hours comfortable lens wear and I could remove my lenses, top up with drops, lenses back in and I was OK for another two hours.
I then cut out much of my caffeine intake and only have two cups coffee per day, cut out all fizzy drinks and fruit juice drink (have the whole fruit now) and drink at least 2 litres water per day. As a result over the next three months I could back off the eye drops and now get a regular 12 hours lens wear which is remarkably comfortable now and only use drops just before putting my lenses in and just after I take them out. This has now been the case for 2 years now.
In December 2005 I could not wear lenses for more than two hours and without them I am legally blind!
After much discussion I asked the hospital to look at the quality of my tears and they were found not to be the best but in the realms of what they would consider normal. I then spent about 3 months finding eye drops that worked and eventually found Systane by Alcon best for me giving two hours comfortable lens wear and I could remove my lenses, top up with drops, lenses back in and I was OK for another two hours.
I then cut out much of my caffeine intake and only have two cups coffee per day, cut out all fizzy drinks and fruit juice drink (have the whole fruit now) and drink at least 2 litres water per day. As a result over the next three months I could back off the eye drops and now get a regular 12 hours lens wear which is remarkably comfortable now and only use drops just before putting my lenses in and just after I take them out. This has now been the case for 2 years now.
Gareth
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GarethB
- Ambassador
- Posts: 4916
- Joined: Sat 21 Aug 2004 3:31 pm
- Keratoconus: Yes, I have KC
- Vision: Graft(s) and contact lenses
- Location: Warwickshire
Emma
As far as I am aware I just have KC, the dry eyes fall under the normal catagory and the hospital think I notice the very slight deficiency because of the KC and the lenses.
The eye drops are avaialable over the counter for £5 for 28 ampoules which now last 28 days.
I could be a bordeline case for Sjogrens syndrome but it ha never been mentioned, I will ask in August at my next check up if I remember
As far as I am aware I just have KC, the dry eyes fall under the normal catagory and the hospital think I notice the very slight deficiency because of the KC and the lenses.
The eye drops are avaialable over the counter for £5 for 28 ampoules which now last 28 days.
I could be a bordeline case for Sjogrens syndrome but it ha never been mentioned, I will ask in August at my next check up if I remember
Gareth
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