Hello

[cjallen1]

Hey everyone,

This is my first post here !

Over the last week I've noticed my eyes have been a bit 'fuzzy' so i went to the optician for a check up (already wear specs for reading,tv, and computer etc..) anyhow ... the optician said I was suspected of keratoconus (in my previous eye exam 18 months ago they said it might be there) but only now am i noticing the lack of clarity on my sight, mainly between looking at the computer screen then outside or from the screen to the driving on my way home from work. Did the illness happen so quickly for anyone else ? the eyesight really being effected over the sapce of a week ? I have some new specs on order, will these help me or should i look into the contact option i see on this web site ?

I'm sorry to blurge out, but im a graphic designer and my eye sight is VERY important to me as i'm sure it is to everyone, and to be honest i'm very very scared right now,

Chris

[Andrew MacLean]

Chris

Welcome to the forum.

Do you have a referral to an ophthalmologist? (An eye doctor)

My son has early stage keratoconus and manages fine with glasses for most things, although he is now waiting for his first pair of lenses for KC eyes. I guess the answer to your question is that if glasses work for you, then go on using them. If there are things for which you need lenses, then wear lenses when you need them and glasses when glasses will do.

Above all; Don't Panic! For the vast majority of people with keratoconus, the condition will never require more than correction by glasses or contact lenses. For some there will be surgical interventions, but even they are less intrusive now than they once were. Then there are the minority who will need to be treated by a corneal transplant; I've had two and worked away at my computer throughout. (I use a Mac that talks to me)

All the best

Andrew

[cjallen1]

Andrew,

Firstly, thankyou, you are a great person and have a great forum here !

I think the best thing for me to do right now is see how I do with the new specs and see if they help me to work etc..

In your experience do the specs/contacts keep the sight back to where it once was ? or a lesser degree ?

C

p.s. Excellent mac work lol !!

[Andrew MacLean]

Before I had my grafts, I was completely dependent on contact lenses. Indeed, without my lenses I was already legally blind. I'd still be wearing lenses now if I had not become lens intolerant, thus becoming legally blind all the time

Still, with nothing much to lose I went ahead with my grafts, and now I wear glasses to correct my vision in my right eye and a lens to correct my vision in my left eye. I get on really well now.

For many years I attended a hospital contact lens clinic with an annual visit to the ophthalmologist who kept an eye on the progress of my KC. From time to time I needed an extra visit to the ophthalmologist, and this could always be arranged on the same day by the optometrist whom I consulted about my lenses.

If you have not already been given one, do go to your GP to ask for a referral to your nearest department of ophthalmology; once there you will find that all sorts of goodies become available on the NHS.

Thank you for your kind words about the forum: the quality of the site is down to the Administrator who will be sitting blushing quietly to himself as he reads this. John, Gareth, Karl and the rest of us work away at the coal face trying to keep the forum a place where people can come with questions and find a welcome and an honest attempt to answer. It does not really matter what the question; somebody here will have faced it before and will be able to offer an answer that is based on experience and research.

All the best

Andrew

[cjallen1]

Andrew,

Do you know if the illness could become worse, or can it even stay at a moderate level ? I mean I'm looking into the future slightly, also I guess I'll know more when I get my new glasses tomorrow afternoon and she how I feel when I have these on ? Do most suffers need to wear glasses/contacts 24/7 ?

[GarethB]

The million doller question.

Could it become worse - Yes.

Could it stay at a moderate level - Yes.

Our condition is so unpredictable. KC returned to my right eye about 16 years post graft in 2004 and came on over a month or so. Since then it's been stable. Comments posted here over the past 12 - 24 months suggests consultants are saying the older you are the more likely the condition is to progress at slower rate. So someone in their 40's will progress slower than somone in their teens is what is being suggested.

Andrew often points out we have a bespoke condition so there is no rule of thumb.

Go to the Contact Us page and give Anne your details and she will send you a raft of information you may find useful.

[cjallen1]

Hey Gareth,

I guess its just something I'm to deal with and see what happens given time ?

Thanks for the contact info

C

[Anne Klepacz]

Welcome Chris!
Thought I'd join in this conversation. As Andrew says, the majority of people with KC manage fine with glasses or contact lenses and their KC stays mild or doesn't progress beyond a moderate level. The trouble is that those who are getting on fine tend not to post here! And it's also very common for people not to realise that their sight is deteriorating, because most have one 'good' eye which tends to take over. So in the initial stages, it's only when you cover one eye that you realise how blurry the other eye has become. Let us know how the new glasses work out. And if you do end up needing contact lenses, there are more and more options out there. All the best.
Anne

[cjallen1]

Thanks Anne,

That is reassuring, I think I've just emailed you !??!!

I'll let you know how the new specs work out !

Thanks both of you for your time !!

C

[dazzabee]

HI Chris

You tend to read a lot on this forum about grafts simply because in most cases that is the last resort for such patients and poses the most questions.

As a positive spin, I was diagnosed with KC in my left eye 15 years ago - it got worse very quickly but is now managed by a scleral contact lens. My right eye was diagnosed with early stages of KC 14 years ago and has not changed at all since the first digagnosis. I also wear a scleral lens in that eye but can manage with glasses too. Just to repeat - don't panic. Every case is different and like Anne said, now is a good time to be getting KC (if good is the right word!) since the options out there are increasing everyday.

Good luck and keep us updated.

Jay