Bad News

[Andrew MacLean]

My son was at the optician today. He is showing early signs of Keratoconus. She asked him to go back in six months for a further check.

I was a bit worried about this possibility so I urged him to go to the same optician as I see. He did and she recognized me when she was taking his family history.

Suddenly my interest in the promise contained in things like CXL and Intacs is far less "academic" and far more personal. Also my interest in new soft lenses has gained a new urgency. I may be in touch with you Lynn!

My son does not currently have access to the Internet so I am going to print off pages from here for him.

Andrew

[Chris Pope]

Andrew,
So sorry to here about your son.

Take comfort in the fact that advances in technologies treating KC seem to be evolving at a rapid rate at the moment.

As a parent of 2 young children the thought of them developing KC later in there lives is always in the back of mind, even more so at the moment.

Fingers crossed for him.
Regards
Chris

[Libby]

Hi Andrew
I can completely relate to how you feel, my daughter was diagnosed in November and I was very upset as I felt responsible. We too are very interested in CXL and I am trying to gather as much info as possible before my daughter returns to the consultant for a further topography.
I hope things turn out well for your son, and as people have repeatedly said to me at least our kids are at a great advantage to what we were as they have *expert" parents to guide them through the sometimes rocky road of KC.
Kind regards
Libby

[Anne B]

Sorry to hear this.
Can i be nosey and ask why you thought he might of had KC.
Does he rub his eye?
And how old is he.
i have to say i am getting more and more worried about my kid's having KC, It really does scare me.

Fingers crossed that there will be no change in 6 months time.
Thinking of you both

Anne

[Zeus]

Hello people,

Andrew i think its very good for your son that he is checking regurarly his eyes with topographies.If you are able try to find a doctor with the latest technology to topography machines such as PENTACAM or Orbscan2.These topography machines are providing the best corneal maps of early detection of KC and moreover with very detail information about curvature,kreadings,topographic astigmatism and all measures of pachymetry.

Also,i want to say that is proven scientifically that in a family only one children may develop KC.This means like for example when you have three children only one is at risk to develop KC.

Furthermore,treatments like mine Collagen crosslinking with a limited topography guided PRK is providing almost 20/20 vision to patients that are EARLY DETECTED TO KC.So,imagine that you are detected with KC but because of the latest technologies to flying spot lasers for aspheric corneas like ours,topography guided PRK treatments and the safety of the Greatness of CROSSLINKING you will afterwards function without glasses or contacts and do whatever you want.

All i can say,is that with the invention of Crosslinking or else CXL, KC is a past problem for KC people.Moreover, with a combined treatment such as Intacs,Topography guided PRK people can function like a normal person to everyday life.

[Andrew MacLean]

I want to thank everybody for their kind and supportive responses.

I'll keep you all posted as things unfold.

Andrew

[Anne Klepacz]

Andrew,
I'm sorry to hear your news. But, as others have said, there are so many new options becoming available for KC, and so much research discovering more about the condition. So people being diagnosed now will have many more choices than us 'oldies'. And for parents worrying about passing on KC to their children, it is quite rare for this to happen, which is why genetic studies here have had difficulty recruiting enough families with several members affected to study. You and your son will be in our thoughts, and do keep us posted.
Anne

[Lynn White]

Andrew,

How old is your son? And do you have any information as to the extent of the KC at the moment?

Its one step at a time at the moment. As KC is diagnosed and recognised more frequently nowadays, mild cases are picked up more than ever before. My Trinidad experiences showed me that. As it is very prevalent there, I took to measuring K's of every patient I saw, especially relatives of people with KC. I did find a good many cases which were mild and didn't progress particularly much and they probably would not have been even been detected had I not been specifically looking for it. (In fact I was told once I was "seeing" KC everywhere!)

In the past, unless it was obvious someone had KC, relatives could have had mild forms and never been detected. My own sister has sub clinical KC and I only picked that up when I did a routine topography - she has no obvious symptoms although her astigmatism has started to change recently, so we are watching it closely. There is so much we don't know about KC, its causes and prevalence.

It sounds at the moment as if your son has mild KC type changes - but do let me know more details if you want to talk about it more.

[Andrew MacLean]

Lynn

Peter is 25. He used to wear contact lenses and the optometrist who fitted these knew that I had Keratoconus. There was not sign of KC two years ago. He went to a new optometrist this week to see if he needed new glasses. as part of the family history the optom found out that he was my son and, like you, opted to err on the side of caution and measured his corneas. His left eye currently shows no sign of deterioration, but the optom is going to measure things again in six months time.

The worrying thing is that his KC has emerged and has become problematic in the two years since his last appointment.

I remember from when I was first diagnosed that there was a period of 'wait and see'. It looks like, for the meantime at least, Peter will be able to have good corrected vision with glasses alone (he never really liked wearing contact lenses, but he was at one time driven by vanity!).

Anyway, at the moment I am ranging between gratitude that his condition has been identified at an early stage and grief that he has it at all.

Will keep you posted.

Andrew