am i supposed to have a normal life????????

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eman samir
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am i supposed to have a normal life????????

Postby eman samir » Fri 19 Jan 2007 11:04 pm

hi every one.wanna ask simple question........am i supposed to have a happy and normal life with KC? can i work efficiently,care for my self,care for my husband and kids? inspite of my very limited vision.iam only 22 years old and i don't know what is waiting for me.iam taking time doing every thing due to my vision.you have long term experience and please advise me.
for indeed,it is not the eyes that grow blind but it is the hearts which are within the bosoms that grow blind...

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serge111
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KC

Postby serge111 » Sat 20 Jan 2007 5:01 am

just try to hold on, carefor your health and seek medical attention and hope for the best...try to get contact lenses...there is special soft lenses for KC, ask ur dr for them

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GarethB
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Postby GarethB » Sat 20 Jan 2007 10:10 am

Eman,

Quite simple yes we can have a pretty normal life.

I have had KC for 20 years, initially it was bad and i had 2 grafts. The only thing I have never been able to do without sight correction due to KC is drive.

While registerd partially sighted aged 17, I repainted my car I was restoring. Never used a spary gun to apply the paint, used a brush for the cellulose paint. The finish I achieved because of my other senses was a mirror finish as if the car had been proffesionaly resprayed.

Now as my KC has taken a turn for the worse, thans to this group I work normally and because we need to adapt and be prepared for when we have an off day. The end of the working day I plan the next which only takes a short time. The result is I am actually more productiove now at work regardless of my level of vision.

After Christmas I repainted the hall, stairs and landing all without the aid of lenses.

Without my lenses are I am legally blind in my rigt eye and partially sighted in my left. This so far has never stopped me leading a normal life and caring for my wife and daughter.

With the support this site provides and familly it is possible to lead a normal life. I know my experience is based in the UK and Germany.

Unfortunatly I have no experience of life in Egypt.
Gareth

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Christine Wallis
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Postby Christine Wallis » Sat 20 Jan 2007 10:15 am

Eman
Speaking from personal experience, I was diagnosed 20 years ago when I was 18 - My vision is very poor without lenses, but with lenses I have a 'normal' happy life and I feel I haven't missed out on anything. Saying that I am very fortunate that my eyes have been 'stable', and I've found lenses that suit me.

I've found you just need to adjust your life, doing the things you need to 'see' when you've got your lenses in.

Stay strong and positive.

Chris xx

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Andrew MacLean
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Postby Andrew MacLean » Sat 20 Jan 2007 5:46 pm

eman

I am now 56 and have had KC all my adult life. I reckon I manage to have a fairly normal life. I have managed to do things that others have not attained: for years I was a competative runner, I have been sky diving, I have attained several degrees from British Universities, I have studied in Austria, I have ... ... ... Well I guess you get the point.

By the way, the al-Hajj is one of my favourite sections of the Koran. Wise words indeed!

Yours aye

Andrew
Andrew MacLean

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piper
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Postby piper » Sat 20 Jan 2007 11:24 pm

dear eman, I haven't figured out what NORMAL is yet!! As for happy, that changes day to day, whether one has KC or some other disorder or nothing wrong at all. Somethimes life is like reaching into a big deep cookie jar and pulling out the two cookies you can get your hand around and still get your hand out of the jar. You get one chance and the cookies you get are the ones you eat, whether they have nuts, chocolate chips or nothing at all, whether they are whole or broken. Be happy....you've got cookies!!

With KC we just get the deal we get.....don't fret about what you can't do or can't see......get on with what you can do and what you can see.

What we have is OUR normal.....no one elses.

Cheers, Piper

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Sweet
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Location: London / South Wales

Postby Sweet » Sun 21 Jan 2007 3:40 pm

I don't think that i have changed many things because i have KC. I have worn lenses since i was 14 so am very used to not being able to see well without them, though i do get around without wearing them i just can't see in detail.

I have done many things including diving 50 feet into a waterfall a year post graft which didn't impress my surgeon overly! LOL! But i enjoyed myself! :lol:

I take each day as it comes and have learnt to pay attention to my eyes when they are getting sore so that i can give them some time away from wearing lenses to avoid problems.

You can do as much as you want with KC, just take it easy and don't push yourself too hard.

Sweet X x X
Sweet X x X

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denner
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Postby denner » Mon 22 Jan 2007 3:44 pm

What is normal? Most people have some cross or other to bare. whether it be phyical or mental, I try to concentrate on the fact that at least with our condition,Something CAN be done. People go blind everyday some with no hope of ever seeing again.I see cant see well enough to live a normal life, But with time and a little luck hopefully I/we will get there.

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Louise Pembroke
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Postby Louise Pembroke » Mon 22 Jan 2007 6:35 pm

I guess much of my life hasn't been 'normal' and at times KC has affected my ability to do what I want or to enjoy life. I have periods of anxiety about the future too which I think we just have to acknowledge will happen and perhaps we just have to go through them, 'surf' them.

Think about all the things you want to do in your life, make a list, then consider what requires good sight, what doesn't, what obstacles there are and how you might get around them.
Loving for example doesn't require sight, but certain jobs do. Being a parent doesn't require sight but reading does but there are ways of accessing it.
Director of Sci-Fi and Silliness and FRCC [Fellow of the Royal College of Cake]

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Ume
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Postby Ume » Tue 23 Jan 2007 3:17 pm

hey eaman,

i'm 21 years old and also worry about how things will be once i'm married and settled down. i dont know how to deal with KC myself, i just take it one day at a time. I've been wearing my contacts for almost six months and my left eye is a complete blur without them, i cant even see myself properly at times! lol. its a hassle wearing them on every morning, i can relate to you in way but these guys know what they talking about they'v been where we are now, i only hope things get better for you.
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