My Brother and his KC

General forum for the UK Keratoconus and self-help group members.

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Matthew_
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Keratoconus: Yes, I have KC
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Postby Matthew_ » Fri 11 Aug 2006 8:39 am

Guys,
Just wanted to say thanks for your help. I phoned my brother last night and discussed it. He really struggled and gave up with lenses. They hoped to use scleral lenses but his actual eye ball is too big. He found that an eye patch with pin holes in was the most effective correction!! Anyway, because he was still in the legal range for driving, he basically gave it up as a bad job and got on with it. He does not drive at night or for more than about 3 hours. Not sure why a graft was ruled out, it doesn't seem that the age criteria was relevant. Anyway that was 13 years ago, so I mentioned that things have moved on in terms of lenses and it may be worth another shot. He is going to go back to the Opthamologist and resume treatment..so thanks very much for your brilliant advice, I am really chuffed.
Incidentally, my mother and late cousin also have/had KC.

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Andrew MacLean
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Keratoconus: Yes, I have KC
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Postby Andrew MacLean » Fri 11 Aug 2006 9:30 am

Matthew

In any random system you would expect to find clusters either familially or geographically. Indeed one sign that the system has been constructed by somebody trying to pretend that it is random is that these clusters do not arise.

Many researchers are trying to find a genetic link to some sorts of KC (they have even coined a name for it: Familial KC). My own view is that the jury is still out on whether there is a genetic factor that disposes some people to develop KC, although some of the work that has been done linking keratoconus clusters to some ethnic groups is taken by many as the final piece of the jigsaw.

Sadly, things are not so easy. It may be assumed that the environment shared by those parts of the national and global community is contributing more than a little to the presence of unusually high KC rates.

Andrew
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Matthew_
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Joined: Thu 13 Jul 2006 3:13 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Gallafrey

Postby Matthew_ » Fri 11 Aug 2006 12:28 pm

Hmmm, the intrigueing world of probability! I had this very discussion with my wife...She's convinced its genetic but I thought that if 1 in 3000 (or whatever it is) has KC then there is every chance of three or four family members having it by complete coincidence. It doesn't make sense on the surface but if you do the maths....

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GarethB
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Postby GarethB » Fri 11 Aug 2006 2:22 pm

KC does not eblong to simple genetics. It would seem from the talk given at the AGM that several recessive genes need to come together all at once to give a pre-disposition to KC.

This then starts making the maths make sense.
Gareth

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Andrew MacLean
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Postby Andrew MacLean » Sun 13 Aug 2006 3:13 pm

But it is the complexity that makes it so engaging! Rocket Science is pretty simple: a missile of a known mass can be propelled by pushing out of the back a known tonnage of thrust ...

But when researchers are trying to track the cause of something as complex as KC they have to take into account genetic inheritance, a whole range of environmental factors, as well as some very confusing epidemiology.

The real danger is that researchers come accross anecdotes of 'familial KC' and jump to the early conclusion that there has to be a genetic cause. Yet families tend to share exposure to the same environmental factors, so you'd really have to control for these before concluding that genetics play an important part

The classic way round this problem is to look at identical twins separated at birth and brought up in different environments. I'm not sure if this has ever featured in KC research, and if not, I am not even sure that you could set up the study today (or even that you ought to!)

Meantime we all muddle through. Eyesight gets worse. Clinicians and surgeons suggest therapies and by and large we go along with what they propose. They may be groping in the metaphorical darkness, but we are the ones left stumbling about with poor sight.

Andrew
Andrew MacLean


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