daughter diagnosed

[Libby]

Hello everyone,
Just a quick update - I posted last weekend in a real tizz following an opticians appt for my nearly to be 18 year old daughter.
We luckily managed to see a local eye consultant privately before he went away on holiday,
KC was diagnosed in the right eye. The consultant was very supportive and positive and was commenting at the increased number of KC patients he now see's in his clinics.
He told us that he does have patients who only have one eye affected and also patients where the KC stops relatively mild.
He has suggested fitting a contact lens in the right eye, so that she can get used to wearing one, then if the eye deteriorates at least she has already got used to wearing a lens.
We in the meantime have an appt in 6 months time, hopefully the right will not have changed much and Im praying that the left is still clear.
Thanks again everyone for your continued support
Libby

[Michael P]

He told us that he does have patients who only have one eye affected and also patients where the KC stops relatively mild.

Absolutely right Libby.

My KC was diagnosed around 30+ years ago but it probably surfaced around 40 years ago when I was 17.

Initially I wore glasses and have successfully been wearing lenses for about 36 years.

Now there is also beginning to be real progress with regard to the management of the condition, eg intacs, C3R which I am sure you are already aware of.

[Andrew MacLean]

Libby

The fact that most people with keratoconus do not progress beyond the mild stage of the condition cannot be stressed too much! Your consultant seems like a wise man and I am delighted that you are able to put so much confidence in him. That has always been my experience, too, with sseveral consultants whom I have seen over the years.

The lens is a good idea. It is always best to make adjustments before they become imperative.

All the best

Andrew

[Libby]

Thanks for your comments and reassurance,
I have had a really bad week since last weekends bombshell. I do have feelings of guilt, because I have KC I cant help feeling responsible for my daughter being diagnosed, I know this is not helpful and I am trying to be more positive.
I also feel that this week as made me re-think about my past negative experiences when I was first diagnosed and the feelings of isolation that I felt. Now thanks to this wonderful website newly diagnosed patients will never feel that isolation.
Thanks to everyone who runs this group, it helps people more than you will ever know.
Libby

[Andrew MacLean]

Libby

I know how hard it must be for you, but you do need to hear this: you cannot possibly be to blame for your daughter's condition. Maybe there is a genetic component to KC, and maybe she inherited this from you. BUT how can you be to blame?

We do not have an opportinity to decide which bits of our genetic inheritance we will pass on to our children, neither are we normally the point of first origin of any such inheritance.

Perhaps your daughter did inherit part of the cause of her KC from you, perhaps another part came from her father, but she also intehrited a great deal else from you, and has received from you an environment of love and support in which she will be able to face life's challenges. KC is a challenge that you would not have wished on her, but if it is one that she must face then maybe your example will be all that she needs to triumph!

Andrew

[Libby]

Thanks Andrew,
Your words of support and reassurance have been invaluable to me.
Libby