UK Keratoconus Self-Help and Support Association

Mr Tuft chose his words carefuly which is why he said from his study it rarely went beyond three generations.

Tommy,

The idea proposed was that in successive generations, the "KC gene" would be diluted. Genetics being the random boat that they are, of course it's possible to pass KC down 100 generations, but it seems reasonable to me (certainly after seeing the research) that the dilution effect kicked in after 2 or 3 generations.

Its good all this research that go's on, I think thats the worst issue with this disease just the pure unknowingness in every form whether it's treatments or causes.
tom

During the 20 years I have had KC, there has been real advances in lens technology and KC management. I take heart in this, so if my daughter gets KC at the same age I did, then in 10 years on we will have even better management strategies. Plus she will have the benefit of sharing my experiences and I think that will help her too.

So I am not too worried if she gets KC. I will be disappointed if she gets it, but that is something different.

I really hope for you your daughter doesn't get KC, i can imagine your worry. I think though if c3r is used properly in KC the forms we have could be eliminated if it's diagnosed early enough. I think this will be a trend we will start to see on the forum in the future. People coming on saying they've been diagnosed then goin for c3r treatment and just staying at the glasses / soft lenses stage.
tom

I think thats the worst issue with this disease just the pure unknowingness in every form whether it's treatments or causes

Totally agree with that Tom and IMO thats why it creates such negative psycological effect and a feeling of hopelessness in KCers
because no-one appears to be taking a lead.

Its 24 years since my diagnosis of KC and we are non the wiser of the cause.

Based on my own experience of monitoring/record keeping by the medical professionals and the system they operate in that does not surprise me.

Our best hope is self help truth forums like these and of course people who are always willing to openly and honestly exchange information.

Thanx for your input Tom.

heya steve, i think i know what your talking about with the record keeping (big untidy brown files fluttering around everywhere lol:roll:) There is a lot of documented stuff on the www tho but it's mostly said in maybe's or probably's. There does seem to be a big link with hormones which a few study's have been done on, also it's well documented that keratoconics have magnesium defiances.
Hope your doing well
tom