To all who have joined this forum recently

[Ladyburd]

Hey Miss Milburn

Here are a helpful few tips that I've accumulated over the years of having KC:

Ask lots of questions at hospital appointments - and to other forum members - don't be shy

Try not to rub your eyes, in fact never rub your eyes (easier said than done!)

If you have allergies, try to get them under control, but bear in mind anti-histamines can worsen dry eye

Don't were eye make up - If you do, never go to bed with it on

If you do have dry eye, increase the amount of orange fruit and veg in your diet, eat oily fish 3 times a week or take a Vit A & cod liver oil (as long as your not pregnant)

The contraceptive pill can affect your ability to tolerate contact lenses

A warm compress or damp facecloth can help with sore eyes

Take breaks every 15-20 mins if on the computer

If you do get hard contact lenses, buy a "sucker/contact lens applicator" on line, to assist with lens removal (especially if they have slipped to the corner of your eye!)

Last but not least - relax, smile and apprecite the things in life that make you happy

Have a fab weekend

C

[bhav231]

I have recently just joined this forum I haven't really understood the condition my doctor keeps on just providing me with new contact lenses and I am not sure if I have reached the stage where it is possible to have surgery.

[Lia Williams]

Hi Bhav and welcome to the forum,

If you can see well with contact lenses then you are probably doing fine. If you are having problems with your lenses do ask at your next appointment if there are any other types of lenses that you could try. There are lots of different types of lenses and different lenses suit different KC eyes.

If by surgery you mean a graft then this is a big decision and is usually only carried out when glasses or contact lenses can no longer give you the vision you require. However even a grafted eye may still need contact lenses.

Lia

[Emma26]

Hi

Not sure where to begin, have read a few posts and am hoping that I can learn from some of you.

I have KC, first diagnosed in 1983, yes, not a mis-print, 1983, I was 13, I have had bilateral grafts, bilateral cataract surgeries, numerous suture removals and am now registered partially sighted.

Saw my consultant yesterday and after 3 years of messing me about bouncing me from consultant to consultant and deciding that contacts weren't for me, he has put me on the waiting list for a second graft on my right eye.

I am now a nervous wreck, I was only 13 when I went on the list the first time and didn't think twice about anything, just went along with it all, having my first graft in 1987 at 17 years old. Bit of a star patient at the time, with so few being done at the hospital I was in, but now, I have responsibilities, a job, a family and the consultant kept reiterating the two year recovery process.

I don't recall it being anywhere near as harrowing before, maybe it's because I was young and my mom did all the worrying etc...?

What I am hoping for is for one of you to tell me you've had it done twice and it was fine. He mentioned having the sutures out at 18 months or therabouts, well, when I had mine done, I only had one or two sutures out and only if they played up or irritated, once I went to theatre and a few times, had them done in out patients, is this a new thing? My consultant was quite offhand about the whole thing, felt he is bored with me and is doing this to shut me up as I told him I was fed up with being pushed from one to the other.

Can anyone throw me a bone?

[Anne Klepacz]

Hi Emma and welcome,
I haven't had a second graft yet, though mine are as old as yours (done in 1986 and 88) so I'm aware that it's a possibility. And I'm not sure I'll be as laid back the second time around either. But we certainly do have members who have had a regraft at around the 25 year mark and have lived to tell the tale!
Surgeons differ as to what they do about stitches. In most cases, they are taken out at around the 18mth mark and sometimes individual stitches are taken out earlier to improve the shape of the graft. But some surgeons do leave the stitches in, I believe, though that's less common.
Getting usuable vision back also varies a lot. Your consultant is giving you the outside figure in talking about 2 years. That was true for my first eye, which didn't really get any benefit until I could wear a contact lens in it again. But with the second eye, I was seeing much better after a few months. And I was back at work 3 weeks after each operation.
But I'm also wondering about your comment about 'deciding contacts weren't for me'. Were different types of lenses tried for you? There's far more choice of lenses for KC than there used to be.
I hope some of that helps. If you'd like our information booklet about KC, a conference DVD and some recent newsletters, do e-mail your postal address to anne@keratoconus-group.org.uk and I'll send them to you.
All the best
Anne

[Emma26]

Thanks Anne

The lens thing was exhausted, my corneas are both very very distorted, soft lenses would have been okay, but intolerable after two/three hours, but I was getting no vision from them, the hard lenses just wouldn't sit on the bent corneas, so a piggy back effect was tried and they just wouldn't sit, spinning round my eyes constantly, have tried them on three different periods since '83 and only the first time really worked for me until the distortion became too wobbly. I apparently have lovely circular graft holes and hexagonal corneas stretching all over the shop. The left eye has now been abandoned as he says that it has become too lazy to bother with so he just wants to try and get some normal vision in the left.

Don't get me wrong, I'm not generally a whingey person, have declined all manner of aids, a dog, stick etc... and am generally very independant, still working, had to give up driving three years ago, never ask for help and wasn't even keen on joining a forum which had been mentioned by the sensory impairment team, but am now quite inquisitive as I didn't have these worries when I was young. It will be good to hear some stories as I am certainly not keen on a two year recovery as I don't think I even worried about it years ago. Mind you, I think I might stretch my sick leave to more than three weeks.

[3stylez]

Hi guys

i was diagnosed with kerataconus in the left eye just over ten years ago. i did cope with just the hard lenses, up to a year ago. but then it got umncomfortable and was on piggy back in both eyes. the kerataconus has slightly started on the right eye. the left eye has some scaring. moorfield say that i am doing well.

i have suffered an infection in the left eye. currently i have a viral infection in both eyes. therefore life has somewhat completed stopped! Glasses are made..but they are no suitable substitute. so now i sit at home, frustated, so much i wanna do, yet i feel so held back, it is completely frustating. no one understands. its a hard world! I an currently taking eye drops, then back to moorfield in about a week.

Guys,i have seen interesting posts, shall continue to look at more. I am graceful for anyone who can offer advise, am open to talk to others also.

Sanjay

[Anne Klepacz]

Hello Sanjay and welcome.
Sorry you're having such a hard time right now. That's the trouble with KC - everything can be going fine for ages, then suddenly disaster! That's why we often call ourselves part time partially sighted - OK when we can wear our lenses, but badly affected when we can't. For now, all you can do is to keep taking the drops and wait for the infection to clear up. There's lots of people on this forum who do understand the frustration of it all, so you're not alone!
All the best
Anne

[DanielKing]

Hello All

i have just joined this great website. I have been suffering from Keratoconus for around 5 years and have been wearing kerasoft contact lenses fro the past year. However, i need a new prescription and a new pair of kerasoft contact lenses. Does anyone know where i can get a pair from that is close to my house. I live in East London and do you know how much they cost (roughly).Would appreciate your assistance greatly. Thanks Daniel

[Daz_31]

In my first post at this forum need to aware You that my English is not perfect as I am Polish living in Northampton 7 years .
So sorry if You cant understand well my posts.
However I had diagnosed KC in January 2013 on my both eyes, but it was highly advanced. Until Christmas 2012 I was worked on my own little business, trying to hide my eye problems. Yes I exactly know from 2006 that something wrong with my eyes.
2006 first glasses in my life,--vision perfect. Then just replace them without eye checks, work, home, holiday, visit parents in Poland--never time for optician, never go to doctor, fell like nothing can stop me in my highly active life. Some day glasses not been good anymore like on the begin.
2009 -2012eyes start playing with good and bad vision, hard to drive in night, fogs itp--but I was still do it ..4 times a Year driving thru whole Europe. Thanks god I didn't kill nobody.Working from morning to evening, driving around 900 miles by week. Swap TVs, satnav, mobile, laptop everything for bigger size screen XXL to make my life easier. My wife know it but didn't expect I cant see so much...One day before Christmas 2012 I drove with her by night locally roads, and stopped. I cant anymore like that, I cant see more then 5 meters ahead. I told her everything with details. Explain why by the few years From really nice friendly person, bloke who loves fun, good cars, helps people much as I always could, I started be a person which don't like anymore going Out, driving by nights and days as well, stops going shopping, stops help people with sort of things like (car insurance, jobcentre, taxes, etc--i cant see any more what I read), ...I was shame that I cant see .
You can ask why I not visit Optician..
I do, few times but a stressful time which I have there push me to stops going there.So Ijust replaced my glasses, and KC on my both eyes go slowly bigger and bigger.
Finally in January 2012 in Lexum Warsaw, Cracow, Praha and Ostrava I have been diagnosed with KERATINOUS very high advanced.
Left Eye 3% of sharpness, Right Eye 10%..--corneal transplant on both EYES --first LE
Stop working, stop lie myself and other --start to search solution.
Founded...6.05.2013 I have a corneal graft DAHL on my left eye in DALK Clinic Piranha Czech republic by doctor Martin Filipec,
. After few complication, rejecting suspicion, and air bubble in eye, and about 10 control visit vision starts get back. I back to UK 3 weeks ago and will need Your help with KC here. My right Eye still nedd to be done, Left eye stiil is recovering. Cant work probably, cant drive probably, probably Iam half blind for system.
I have lots of question and worries about how to touch this here in Uk. I have been here from 2004 but just 2 Times visit GP last time week ago for eye drops.
Ones again sorry for my spellings