Introducing myself

[Alison Fisher]

Hi everyone

Heavens, where to start? I'm now 43 and was initially diagnosed when I was 19. After many miserable years struggling with contact lenses I had my first transplant in 1992 and my second in 1996. I know, all things considered, my sight now is amazingly good but I do struggle with some things which can get me down but I try to dwell on the good things instead of the bad.

My biggest worry is that I will have passed it on to my two daughters (as my mother did me). The eldest is 16 and this week was prescribed glasses for the first time for mild short sight. I keep telling myself to stop making mountains out of molehills, and that worrying won't change anything but I'm not doing a very good job of listening to myself.

I've never had any contact with anyone who has KC before so it was quite an exciting moment when I found this forum. My family is great but nothing beats talking with people who've been there themselves does it?

Looking forward to getting to know everyone, Alison

[John Smith]

Hello Alison, and welcome to the forum!

I'm not an expert, but I do think that it is unlikely that you have passed your KC on... but even if you have, you are living proof that KC is not the end of the world.

We are actually having a presentation next Saturday on the genetics study on KC recently carried out at Moorfields; I'm sure we'll know more about the heredity of the condition then. If you want to pop down to London, please feel free to come along.

Full details are on the event page.

All the best,

[Amarpal]

Welcome Alison, I joined recently too, and I have to say, its a brilliant forum.

I'm 16, and I was diagnosed with keratoconus when I was 14. Thankfully, it was diagnosed early enough before it got worse. Even if your daughters inherit keratoconus, I'm sure your will have caught it out early too. I began with glasses for mild short sight too, and now I am wearing RGP lenses. Don't worry too much; as long as your daughter continues her eyue appointments, her condition will be managed well.

[jayuk]

Alison

Welcome to the forum!

Its really good to hear that you are achieving good vision with both your grafts!....Can I ask how well you see now; both aided and unaided with Lenses/Glasses?

In terms of your worries, I am sure there are many here who also share the same! I have a 11 month old now and posed the same questions to my consultant and also Ken Pullum; who both went to great lengths to make me understand how KC MAYBE passed on to children (I say MAYBE as I still cannot conclusively say whether its Gene related). Anyway, suffice to say, that the chances of your children having KC are dependent on if both you and your other half have the gene!......

I can understand your concern about your child having to wear glasses; but to be really honest there is very little we/you can do right now in stopping this. HOWEVER! - One thing I would like to say is that I would much rather be diagnosed with KC in 2005/2006 than when I was 11 years ago! The treatment that is currently available; and the lens technology that is currently in the market is amazing!....So please do consider these areas........and try not to let it get you down (easier said then done!)

I hope that does help!

Jay

[Alison Fisher]

Thanks for the warm welcome.

Hi John
I would be very interested to hear what's said at the presentation. That day is my youngest's birthday so I don't think she'd be too happy if I disappeared for the day (although having said that as she'll be turning 14 perhaps she might be only too pleased ). Will what's said be covered on here? With both myself and my mum having it I'm extra touchy about it - the co-incidence is a bit too much, you know? I don't know if my experiences have been good, bad or fair to middling but I'd be extremely upset (understatement) if I thought one or both of my girls were facing the same journey.

Hi Amarpal
Thank you for the reassurance. How are you getting on with your RGP lenses? My eyes were changing that rapidly I don't think I ever had a single one that fitted correctly.

Hi jayuk
How well can I see now? Ooh crikey, I can't quote you any numbers or the like as they tend to go straight over my head but if it helps my optician tells me that there's no reason why I can't drive. I've never driven and nor do I want to. I don't trust my sight enough, plus I struggle in sunlight and my nightvision is hopeless. I wear glasses (am hopeless without them).

Long before I had my girls I asked my consultant what the chances were of me passing it on to any children I might have. He missed the point entirely and I got a right old lecture about how KC wasn't bad enough to be thinking about not having children - er, I wasn't, I just wanted information.

Thanks for the reassurance. I am trying not to worry, and yes, even though I'm out of date with what lenses and treatment are available now I have no doubt that it is better than I had in the 1980's.

Alison

[Andrew MacLean]

Alison

At 56 I am just 13 years older than you. I lived for years with KC before I moved on to lenses. I wore lenses for years before they had to move from RGP's to other sorts of lens. I eventually agreed to have my first graft when i was 53. by that time I was leagally blind. I now see well ehough to drive and expect to have graft number two this summer.

This forum has been a wonderful resource for me. I can only hope that you will find it as much of a benefit as I have.

Meantime, it is good to meet you.

All the best,

Andrew

[Sweet]

Alison, hello there and welcome to the forum.

Can i just ask as i'm not sure if i read your post right, but does your mother have KC as well? And this is why you are more worried about it being passed on? If that is true then you are the first person i know to have a direct relative with KC besides myself, but as i am talking about a twin sister it is hardly surprising!

I would agree with others here and say please try not to worry. If and that is a BIG if you have passed it on, as we are not sure if it is genetic yet, then you will be in the best place to help them out as you understand exactly what it means to have this condition.

Please look after you and hope to see you posting again soon! Take care, Sweet X x X

[Alison Fisher]

Hi Andrew
It's good to meet you too.
Good luck with your graft. Having been through it once how are you feeling about doing it again? There were four years between my grafts because I had so much pain with the first I couldn't face having the second one done. Not a good thing to say to someone about to have it done I know, and for that I apologise. The results were well worth it all though.
With never having had any contact with anyone else with KC I have no idea how typical (or not) my experiences have been.
I had a terrible time with contact lenses. I used to feel physically ill every time I put them in and my eyes were so sensitive I couldn't stand even the slightest movement of air on them. For the last three or four years before my first graft one eye was given up on and 'abandoned', and it wasn't until they couldn't fit the other with a lens that they put me on the waiting list for a graft. By that point it was a case of eye chart? What eye chart? Looking back I've no idea how I coped, but you do don't you? When I was talking about it the other night with my eldest we had quite a giggle about the various misadventures I had when trying to look after my youngest when she was a newborn and my sight was at its worst. All part of the family folklore now, and a fertile source for much leg pulling.

Hi Sweet
Thanks for the welcome.
Yes, you read right, my Mum had KC. She only had it very mildly, and never wore lenses but she definitely had it. There is no other family history of it, but I'm sure you can see why I am concerned for my girls. I'm not sat here worrying myself silly about it but the trip to the opticians with them this week didn't half give me a jolt.

Sorry I've rambled on so. I have a well deserved reputation for it.

Take care all, Alison

[Sweet]

Alison, now i understand why you are so concerned. I just thought that i was going mad in misreading what you posted as no-one who replied to you before me mentioned it. Maybe it is because the genetics study is being discussed next Saturday that i am thinking a lot about it.

As you are the only person here besides myself who has mentioned a family link i would say not to worry at the minute. I am sure that when we get some results from the study John will post and let you know. Please take care, Sweet X x X

[Andrew MacLean]

No need to apologize. I feel pretty good about my second graft. I start with pretty bad pain in my eye, and the memory of awaking from surgery after graft number 1 and realizing that I no longer had any pain in the eye they had grafted.

I also start with no sight in my yet-to-be-grafted eye, so nothing really to lose on that front either.

The worst bit is the wait, and while know that nobody is going to die so that I can have a graft, I do know also that my graft can only follow somebody else's death.

So I wait patiently. I see my surgeon on March 30 and I guess he'll bring me up to speed on the likely timetable then.

all the best

Andrew