i have to admit it i am really scared,need some advice

[FLOFLO]

hi everybody,i am on the waiting list to go and see a specialist,after having an eyetest and being told that i have mild keratoconus,he told me not to worry and that he thinks i might be advised to have contacts which are hard.i am so so worried that i will lose my sight or need an operation to transplant the cornea,i do think my sight is very good at the moment,i am 41and this was only my second eyetest ,my first was 18 months ago but through some error the referral to the hospital did not happen,i would love some advice on what to expect when i see the specialist at hospital and what tests might be done,i feel like i am a child again,i had never even heard of this condtion before this,also what are the chances of me losing my driving license,thank you all in advance xx floflo

[Andrew MacLean]

Hello Floflo and welcome to the forum.

There is a lot here but let's try to separate out your questions.

Firstly, very few people with keratoconus will ever progress to the point where any surgery is needed. You say that you have mild KC. Most people in your situation get normal or better than normal sight with contact lenses.

It is scary to be told that you have an eye condition and your mind runs away with you. It is hard to process information but if you take things one step at a time then things can be managed.

If the time does come when surgery is indicated then we will cross that bridge with you. In the meantime read through the strings here and you will find that people have faced these situations and have triumphed over them.

Every good wish.

Andrew

[Anne Klepacz]

Hi Floflo
To add to the reassurance that Andrew has already given you, keratoconus is usually diagnosed in the teens or early twenties. People who develop KC later in life are much less likely to find that it progresses very much. Keratoconus involves thinning of the cornea, and after the age of 40, the cornea starts to become thicker with age. So, although there are never any absolute guarantees, the chances are that your KC will stay mild. If glasses can't correct the vision enough, then contact lenses usually give a big improvement. Good luck!
Anne

[kitty kat]

I have mild keratoconus and was diagnosed in my early 20's, now late 30's and not much has changed, I wear glasses which I get on with fine.

All the best to you

[FLOFLO]

thank you all for your replys ,its great to have advice from people who are going through the same thing although i do know everybody is different,is anybody able to tell me what they think will happen at my first hosp vist,also just want to say what a really great group this is,i have read so much and learnt so much which is such a god send when there is so much going on in your head when you first learn you have this thing you have never even heard of x : floflo

[Lynn White]

FLO FLO

I am an optometrist specialising in keratoconus and you can contact me (details in my signature) anytime if you need more information. You need to understand that a referral is always necessary in the UK to get a diagnosis, even if your condition is really mild and not particularly progressing.

You will be looked at by an ophthalmologist who will confirm (or otherwise!) that you have keratoconus and he/she will discuss with you the likely prognosis. I would say it is highly unlikely, at your age, that you will progress significantly. Those diagnosed in childhood are the ones who are most likely to progress though even that isn't always the case.

You will then most likely be passed to the contact lens department for assessment which may be on the same day but quote often on another day. The reason you will be referred for contact lenses is that your cornea is an irregular shape. This means light passing through your eye is not focussed properly even if you wear glasses - but contact lenses smooth out this irregularity enabling you to see much clearer. Such contact lenses are subsidised on the NHS which may be another reason for referring you, as you would have to pay full price for these on the High Street. So please do not think you are being referred because your eyes are in a bad state!!

Please do contact me if you have further questions!

Lynn

[Ali Akay]

Hi Flo Flo

Just to add to Lynn's comments, if your vision is very good as you say it is, there probably wont be much benefit in fitting you with lenses at the moment. They will probably carry out corneal topography (mapping) to confirm the diagnosis and provide a baseline for future comparison. They may offer you contact lenses if you are having any symptoms suggesting you will benefit from them ,otherwise there is nothing wrong with staying as you are for as long as you retain good vision.

[holmes]

Don't worry too much, my dad was in his 40's when he was diagnosed with mild KC, it has not progressed since then and he has a good level of correction with lenses. My brother was diagnosed 15 years ago and has not really progressed ai all so it is not always a horror story. Unfortunately I was diagnosed at 13 years old and my eye sight is terrible even with lenses because it is an advanced case. Hopefully because yours is mild you will be fine!

[director]

I had a severe case of keratoconus, diagnosed when I was twenty.

If I would have been a great patient, followed doctors' orders, gotten lots of support from people as you can get here and managed my stress, even my severe keratoconus could have been only one of life's many obstacles to transcend.

Losing my eyesight (as I did in my 50s) was more my own fault than anything else. Keratoconus is challenging because there are so many factors that cause fluctation. But 99.9% these are all manageable, if you find yourself a doctor you trust. And, handle yourself as a great patient.

Worst case scenario you will be fine, a bit challenged -- and -- a stronger and wiser person for it all.