Question from a newly diagnosed

[Johanna]

Hi all,

I have just been diagnosed with KC (last Friday). From what I read on medical sites and from what my optometrist has told me so far, it would seem that surgical intervention is rare. However, this information does not seem to match the experiences of those with KC on this site, as it seems the majority of people have had some sort of surgery. Is it possible to live with KC without ever needing surgery, or is there a lot of misinformation out there regarding the percentages of people who must have surgery?

Any information provided would be much appreciated.

Cheers,
Johanna

[Sweet]

Johanna,

Hi there welcome to the site!

I am sorry that you have been diagnosed and need to be here but am hoping that you will find loads of support and any information that you need.

It is nice that your optometrist has said to you that surgery is rare, because it really is. Most manage very well with contact lenses or glasses and never need to have a graft done.

Most people go online and post in forums because they are in a very bad place with the condition, so you are indeed reading some bad stories about what could happen. I only came here a year and a half ago because after wearing a lens for fifteen years and managing well I suddenly had problems and needed some help.

There are many people who manage very well who we do not see! So sadly there are more bad stories here than good but we have a lovely welcoming place where you are more than welcome to join us.

It is always hard to be newly diagnosed, but it is really difficult to go online and read many bad stories from others. There are many good stories though and I hope that you will stay and be one of them!

Where are you at in treatment? Have they talked about glasses or lenses?

Take care!

[Mandy]

Hi and welcome to the site.

I totally understand the anxiety you must be feeling, particularly when you are first diagnosed. However, let me stress at the outset, that not everyone here has had a graft (I haven't).

I was diagnosed last May and when I looked the condition up on the internet, I scared myself.

However, when the initial shock of being told you have KC sinks in, and as you start wearing lenses, you will learn to deal with it. In my opinion, and I'm willing to be corrected on this, I get the impression that those with advanced KC or those who are just diagnosed are the main users of this site simply bacause its a great place to be supported.

I am managing well with my lenses, which I've had for almost a year and that is probably why I don't post that often. Although I do "lurk" on the site and look at it regularly. For me, its just great to meet other KC sufferers and to know that there are people on this site with a range of experiences of KC.

I hope that reassures you but remember your amongst people who understand.

Best wishes
Mandy

[Andrew MacLean]

Hello, and welcome to the forum.

Yes, it really is true that the vast majority of people with KC never need any more intervention than wearing specs or contact lenses. The forum does give a skewed impression because many of us found our way here when we had advanced beyond that point.

All the best

Andrew

[Johanna]

Hello everyone,

Thanks so much for your quick replies. Your kind words and reassurances mean so much to me and are helping me through the initial shock, fear, and confusion of this diagnosis.

Sweet, your post helped so much and yes it makes sense that those with the most difficulty would make their way to this site. Thank-you!!

Mandy, it is great to hear from another person who has been recently diagnosed and I'm glad to hear you are managing well. Thank you for your very kind post.

Andrew, once again, a personal thank you for your reply. I can see that you are a wealth of knowledge on this condition and I'm sure I'll be seeking you out for more advice in the future - you are obviously a very positive person despite the difficulties you face.

I guess the bright side of this diagnosis is the people I am meeting online - truly a wonderful group!

Cheers,
Johanna

[Johanna]

Hi again,
In answer to your questions Sweet - I was just diagnosed a few days ago. My left eye is much worse than my right (my right eye still has very good vision 20/40), but left has deteriorated quite a bit and I can no longer read any print with this eye alone. I pick up my first pair of glasses this week (I have always had 20/20 vision). Then, I have an appointment with a specialist, although my optometrist said that could be up to six months. Hopefully, I will receive some more information on my prognosis and the eventual progression of this condition, although from what I am reading it appears as though it is extremely unpredictable. I'm hoping to stay with glasses for as long as possible before switching to contacts. I'll keep you posted!!

Cheers,
Johanna

[Sweet]

Hey again!

It is good that you are going to try with glasses first, hopefully you will get a good response with them. Lenses do sometimes take a long time to get the right type and fitting but it is well worth it when you can see well!

Seeing a consultant can take a while but you will be able to get a load of information and advice on what treatments are available for you.

Take care!

[mike scott]

hi johanna
welcome to the family

sorry to hear you have been diagnosed.
dont panic!!!

if at the moment you are being prescribed glasses then hopefully you are at the beginning.
as has already been said the vast majority of people manage KC for the large part with lenses of which there is now a vast array, for their whole lives. surgery is always a last resort and is a very long way down the line if you ever reach that point, so seriously dont panic,
you are roght though , KC can be unpredictable , which therein lies the challenge.
the way i look at it is , its gods way of giving the rest of the "normal" sighted world a chance, because if we can compete on an equal footing with them , then just think how good we would be without KC lol

without sounding cheeky , you dont say how old you are.

take care

mike

[Karl R]

Hi Johanna,

Sorry to hear of your diagnosis.

KC in itself is a fairly rare condition, but amongst KC patients surgery is even more rare and is usually the last resort when management with either glasses or contacts has failed.

I was diagnosed in November 2005 at the age of 33, but it is more than likely that I had KC form around the age of 15 but, as it was at that time very mild, my deteriorating vision was put down to severe astigmatism. Even before I was diagnosed I, upon reflection after surgery, was making allowances and adaptations for my poor vision.

After diagnosis I didn't let KC rule my life and carried on as far as possible leading a normal life with adaptations. The only thing I missed was driving, still gave the kids stories at bedtimes even though I couldn't see their books most of it was made up as I went along.

KC is not the end of your life, it is merely a new challenge.

I wish you all the best

[Johanna]

Thanks for the words of encouragement guys - Mike, I don't mind you asking my age at all - like Karl I have been diagnosed at age 33. I wish it could have happened at a later age, as I am just beginning a new career, but life goes on I guess.

Cheers,
Johanna