How manageable can Keratoconus be?

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Smudgersmith
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How manageable can Keratoconus be?

Postby Smudgersmith » Tue 10 Jul 2012 9:31 pm

I know it seems a broad question but I haven't really been able find out. How 'normal' (horrible word) can life be with Keratocomus? Sorry for the broad question but I'm the panicky type, I tend to ask these questions.

Steven.

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GarethB
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Re: How manageable can Keratoconus be?

Postby GarethB » Wed 11 Jul 2012 7:02 am

My personal opinion is that in a vast majority of cases it is very manageable and the popel you get on support group forums are those like yourself that are new to the condition or are having problems and wanting advice / ideas on how to reolve the situation so it is very easy to get a distorted opnion on how KC affects people.

For me in the 26 years I have KC, I would say that I have only suffered with it a couple of times, first soon after diagnosis because my KC was quite agressive (very unusual) in that I needed a graft within 12 months of dagnosis (right eye 1989 and left ey 1990), all went well until 2004 where there werw a few hickups when I had to go back to RGP's, but since 2008 on soft lenses for KC. 2004 to 2008 had the biggest impact on my life as my daughter was quite young I had limited lens weear. The upside was that I was given oppertunity to try something different at work which lead to a promotion and slight change of job which gave me the expereince to go for a job in Europe and travel in 2011.

When first diagnosed I was doing A levels and KC had no real impact on that despite studying chemistry, physics and biology while being registered legally blind. Only registered blind because I didn't want to be recovering from a graft in the middle of m A level exams.

The fact I had a graft lead me to use it as a chat up line once and the poor girl I tried it on is now my wife and we have been together for 21 years and married for 17 years.

You will have your ups and downs like anyone elese in life without KC, but on the whole there is no reason why you will be unable to live a normal life with KC.
Gareth

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Andrew MacLean
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Re: How manageable can Keratoconus be?

Postby Andrew MacLean » Wed 11 Jul 2012 11:16 am

For most of my adult life I livd with Keratoconus that was well controlled by wearing contact lenses. In those years I drove my car, went skydiving and lived an altogether normal and active life. For the majority of people with keratoconus this describes, more or less, their life long experience.

I did develop a complication that interrupted my comfortable existence, but my story at that point becomes less typical and does not answer your question.

In short, for most people Keraotocus is very manageable.

Andrew
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Lynn White
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Re: How manageable can Keratoconus be?

Postby Lynn White » Thu 12 Jul 2012 8:12 am

Hi Stephen

There is a good reason you can't find out an answer to your question - it very much depends on the individual case. But you knew that really :)

Life can be very normal with keratoconus - but it depends so much on the severity of the condition and how much it affects both eyes. It also depends on how quickly it is picked up and diagnosed and then how it is managed/treated.

I am an optometrist who deals only with keratoconus and other related conditions and I see people across the whole spectrum of life "difficulty". I am actually quite short sighted myself and there are quite a few of my patients who managed to life a "more normal" life than I do, eye wise.

You will not find many people who have a normal life in online communities - they are too busy getting on with life. Thus, when you do start researching keratoconus, you tend only to hear of the real problems and of course, that can be very worrying.

However, increasingly treatment of keratoconus like CXL holds out the hope of life returning very much to normal levels.

If want more specific advice, do not hesitate to ask in the thread or by pm.

Lynn
Lynn White MSc FCOptom
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email: lynn.white@lwvc.co.uk

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TristanHolmes
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Re: How manageable can Keratoconus be?

Postby TristanHolmes » Sat 14 Jul 2012 7:17 pm

Hello!
My opinion on this question is we are all very different individuals and KC effects us all in individual ways. Therefore managing the effects of KC will vary from individual to individual. I was diagnosed with KC at 14 and have now been managing KC with Scleral contact lenses for twelve years. These lenses have allowed me to complete college, leading to an amazing career in zoological conservation at Newquay zoo and i couldn't be without them. I actually joined this forum recently because i needed advise myself that i could apply for a new position as a senior keeper in the Tropical House. At first i felt like i was not worthy of such a position as i felt that i would be a burden to our charity if i had to take time out of work for an operation that could prove life changing for my career if all goes well. I wasn't going to apply for that job!

Thanks to some friendly and strong words from members of this forum (Thank you very much everyone!!!!!) i was able to approach my employers with confidence who have been very supportive in the last few days and encouraged me to go for the position. So i'm now working on my CV!!! So i think it goes to show that despite having KC, it doesn't have to stop you leading a normal and healthy life, full of opportunity if you manage it in the way that suits the individual the most apropreatly.

The only thing i find difficult about KC is being able to stay in such places that could prove dangerous during night whilst your lenses are out. I mean those places such as south east asia in the monsoon seasons, but perhaps thats a story for another time.

This is easy to say, but dont let KC controll you, you conroll KC. In some ways i wouldnt be the person i am today if it wasn't for having KC and i am despite being alittle lacking in confidence proud of the person i have become and have i good idea of the person i want to be in the future.

Thanks for reading
Tristan Holmes

harker
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Re: How manageable can Keratoconus be?

Postby harker » Mon 16 Jul 2012 2:29 pm

I have keratoconus and can say fairly categorically that it hasn't impeded a normal life. I tend to spend my days in glasses, which offer flawed but good enough vision, and then switch to lenses in the evening, which offer vision that is almost perfect. KC causes a bit of extra hassle, but that's it. And it hasn't stopped me holding down a job as a videogame/technology journalist, which obviously involves a lot of screen-based work.

I'm lucky compared to a lot of people. My KC progressed slowly, and I've always been able to get semi-decent results from glasses, which give me a respite from lens wear. That said, I don't think I'm a particularly unusual case study, either.

Best of luck.

Jezzafletcher
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Re: How manageable can Keratoconus be?

Postby Jezzafletcher » Tue 17 Jul 2012 12:06 pm

Hi there - all of what has been said so far Is spot on - KC moves in with you and is your guest - you have to decide whether you will respect it but manage it or alternstively allow it to become the Master of The Manor! I am now Registered Partially Sighted - had to stop driving 8 years ago but manage a Service of well over 200 Managers & Operational Staff. I have had a graft which has been OK but now have to have surgery for cataracts and to replace my lens. I have a family and many interests. The trips and falls are everyone else's fault and people bump into me - I never bump into them! Oh... And I must be one of the exceptions to what Lynn said as I do lead a normal life but do find time to contribute on here too (perhaps I am delusional)!!! It is scary having KC. It's always with you and you never quite get to grips with it as there are always side-winders and "what if's" you hadn't thought about no matter how mild or severe... Things like what if I have kids, will it affect them? How will they deal with me struggling on and tripping Over in front Of their mates. Will I "see" their weddings, eventually (heaven forbid) will I see our grandchildren? Will I be made redundant in such tough times & who would want me then? Blah blah. Even with rapid KC you get time to adjust and thankfully most people have it mild and slow - a bit like a good Korma. Even if you have the Vindaloo version to a degree it's up to you how much you get on the tablecloth Good luck & stay in touch!
Jez

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Anne Klepacz
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Re: How manageable can Keratoconus be?

Postby Anne Klepacz » Tue 17 Jul 2012 1:20 pm

Love your Korma and Vindaloo analogy, Jez. Perhaps we ought to suggest it to the professionals as a new way of classifying of KC!
Anne


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