UK Keratoconus Self-Help and Support Association

It's been around 18 months since keratoconus entered my life, and since then, I haven't personally gone a single day without thinking about it. Every time I see something that's not 'right' i.e. it could be glare from lighting or double vision on text, I'm covering one eye up and seeing how it compares to the other, or squinting to see if I can get it better etc. I am constantly comparing unaided vision, to what I get with glasses or contacts. I'll be honest, it drives me mad. I'm sure I drive others around me mad talking about it too.

I've read several times throughout the internet how people manage to just 'get on with their life' and don't let keratoconus ruin it for them... at the moment, I feel very jealous of these people. I can't imagine not thinking about it on a daily basis.

It's not even that it always gets me down as such (everyone knows there are good days and bad days) it's just that it's always there. I do have quite an obsessive mind, so I guess that doesn't help, but in general, does it get better?

Good question Cripps. My own journey has been longer than yours but shorter than many, it's probably around 10 years since I was first diagnosed. The checking each eye, checking contacts vs glasses is something I can certainly relate to. I probably still think about KC every day, whether it is late at night when my eyes "gunk up" and vision tails off or when I find myself having to wear sunglasses on relatively overcast days.

I guess that the fact I'm having a period of good sight helps; it doesn't get me down as such, it's just something I live with.

I too think about it every single day - however I try to remain positive lots of people wear glasses or contacts and I find myself no worst of a person for having KC! The not knowing is obviously scary but you can't live life worrying.

I try to use KC in a positive way I.e. It's motivating for me knowing that other people in the workplace have no vision issues but I am still managing to compete and excel at work.

Having had the condition for nearly 30 years now which includes corneal transpalnt in each eye 25 years ago and a major wobble in the transplants 10 years ago the condition has become a part of my normal living and generally unless there is a problem the only time I think of the conditon is when I wake up just to give thanks to those people and their families that had the courage to donate and allow their loved ones wishes to be fulfilled.

As to thinking I've got KC, what's it going to bring today, then no, I only think of it when there is a problem which isn't that often.

CrippsCorner wrote:It's been around 18 months since keratoconus entered my life, and since then, I haven't personally gone a single day without thinking about it. Every time I see something that's not 'right' i.e. it could be glare from lighting or double vision on text, I'm covering one eye up and seeing how it compares to the other, or squinting to see if I can get it better etc. I am constantly comparing unaided vision, to what I get with glasses or contacts. I'll be honest, it drives me mad. I'm sure I drive others around me mad talking about it too.

I'm the same really. I've always said that having the keratoconus itself doesn't bother me, it's more that I can't get anything which properly corrects it. One thing which should give us hope is that the research into KC (and how to treat it) is developing very quickly.

Yes I saw something on Twitter recently about scientists in Iran (iirc) dedicating their research to finding a keratoconus cure... well actually, they think they're almost there but require a huge amount of funding. Made me slightly dubious about it, but lets hope it's legit.