UK Keratoconus Self-Help and Support Association

Hello,
I'm new to the group and have been very reassured by reading many of the posts that my case although annoying and frustrating is not uncommon. I have been attending and eye hospital in the south east england for 3 years, after trialing more than 10 different lens types I have still had no luck. I have been referred to a different eye hospital which will be able to discuss some other options but still awaiting appointment. I have decided to take action and booked to go private...for a hefty cost.

Im comparing my experience to my twin sister who also has the same condition. she attended a clinic in Aberdeen through the NHS, she explained the optician spent almost 2 hours having a look in her eyes with all sorts of fancy equipment and fitting the correct lenses, after the initial fitting she just returns once a year for a check up and to order new lenses. Her lenses are perfect and she has had no trouble. My experience is a 30mins slot at the eye hospital, there is a magnifier and a light but that as advanced as the equipment gets, no one has ever looked at my eyes with a topography machine, I get bout 5 different lenses bundled in my eye, leave with sore eyes, return 6 - 8 weeks later to explain that due to various reasons the lenses aren't suitable and then the cycle starts again. I have become very frustrated angry and emotional about horrible condition in my eyes, I'm angry with my local eye hospital for forcing me to seek a service else where that I should be entitle to for free. I work as a nurse in ITU, its making my working day more stressfull and tiring that it should be. I'm studying at the moment and again things arn't easy. I have told people at work that I have KC, but I think they feel its more a vanity thing when I keeping banging about sorting out lenses. I wear glasses at the moment but my vision is deteriorating, I'm 29 years old and if somebody had told me 10 years ago that I was going end up with vision as I have I would have been petrified, in a way ignorance is bliss. Sorry for my moany post but this KC malarkey has been getting me down!

No apologies needed - you've come to the right place to have a moan! KC can be a really frustrating condition, especially when so few people understand how it can affect us. But here you'll find lots of people who do know how KC can 'get in the way of life'. Have you found the leaflets about KC and work on our home page www.keratoconus-group.org.uk/sitev3/publications.html which might help your work colleagues and bosses to understand? There's also other information we can send you if you e-mail your postal address to anne@keratoconus-group.org.uk
Three years is a very long time to struggle to find lenses that will work for you, so I do hope you'll get there in the end, whether that's by going privately or through your referral to another hospital. And as you probably know, there are other options these days such as crosslinking to stop the progression or Intacs which can improve the shape of the cone. Working in the NHS, I'm sure you know how much hospitals can vary in the service they offer. For KC, it tends to be the centres in large cities that see a lot of people with the condition and so build up the expertise (which isn't to say that there aren't some very good optometrists in smaller hospitals too).
Don't give up hope and let us know how you get on.
Anne

I have my appointment next week so i will let you know how it goes!

You mention you're in the South East... where about? I'm in Southend and tbh the hospital here has been very good, although of course no where near as fast as going privately. But the cost is so greatly reduced I'm happy to carry on. I'd definitely think about CXL if you haven't already. I've had it performed on one eye and am getting the other done next month.

liseyloojack wrote:Hello,
I'm new to the group and have been very reassured by reading many of the posts that my case although annoying and frustrating is not uncommon. I have been attending and eye hospital in the south east england for 3 years, after trialing more than 10 different lens types I have still had no luck. I have been referred to a different eye hospital which will be able to discuss some other options but still awaiting appointment. I have decided to take action and booked to go private...for a hefty cost.

I completely understand how you feel. I've had no luck with contact lenses and it's incredibly frustrating. It does feel like life is on hold sometimes.

If your eyesight is continuing to deteriorate you really should look at having cross-linking done to at least stop things getting worse. I've already had cross-linking, but I'm now thinking about having more surgery just because I'm getting nowhere with contact lenses.

Hi James what else are you thinking of having done?

I'm just looking at different options at the moment. None of them are perfect, but I think I'll have to have something done. PRK might be one way to go.

Right, I've always wondered if 'we' could have treatment done to fix our astigmatisms, even if if won't improve the keratoconus at all... tbh I'm not completely sure of the links between the two.

The way I think of it is that keratoconus is the disease which causes the cornea to weaken and become thinner. It's this which causes the cornea to bulge out, and it's effectively that 'bulge' which is the astigmatism.

Most people who have astigmatisms have a 'regular astigmatism' (where it's symmetrical), but keratoconic eyes usually have 'irregular astigmatisms' (where it bulges out more towards the bottom of the eye) and these are harder to correct.

There are operations out there which can flatten the astigmatism, but as I say, none of them are perfect. And as always with keratoconus, you can speak to different consultants and you'll get completely different (and often contradictory) advice. It's never easy!

Hi James,
Did the CXL improve your vision, allow better chance of fitting a lens, is the procedure painful? I've got my appointment on sunday really positive about it so hopefully I can get at least one of not both eyes sorted(left is worse). In the past I've had general comfort issues not able to wear them during long days at work, surface greasing issues. Are you still attempting to find suitable lenses?