I have been diagnosed with Kerataconus

[ink4-u]

Hello its Jay
well, not been such a good week for me as i have been diagnosed with Kerataconus which is quite nasty as far as im concerned. Its an eye condition, where the cornea in your eye keeps getting steeper and steeper. Like a steep bank. The steeper your eye gets the less you can see. Eventually you wont be able to see what's next to you, which is quite a daunting thing as your vision is getting worse each month. Now i dont know that much about this, but i thought there may be someone here who has it? or you may know someone who does and can tell me some information about it how its affected them. Laser is a NO NO to this. A cornea transplant is an option when im as good as blind. There is a new surgery about that costs £4.5k and apparently works, there are only 8 people in the world who do this, about 250,000 people have had it done but the long term affects are not known, would you save up and have it done?

anyway if you know anyone or you have it then get in contact with me i would like to know about it.

 

[freecybermag]

Hi Jay

I myself or anyone that I know doesn't have this but I hope the best for you. I bet it's very unpleasant for you at the moment.

Yes I would save the money and have the op. Worry about the long term affects later and you never know if there are any they might be able to treat it.

I wish the best for you anyway

Chris

 

[Urban Space]

God we're all in the wars here aren't we! Claire's preparing for hospital, my heart completely stopped in English today and now you! Sigh!

I'd save up for it because if you haven't got your health then what's the point in wealth? Might as well spend the wealth on your health. That make sense :?! You'll be much wealthier with your health, just in a different way! :?!

:lol: I need my brain checking too!

Liam

 

[Mortime Business Software]

Hi Jay. I don't know what to say. My deepest sympathies are with you and hope it turns out okay. If it's as debilitating as you describe, I would take the treatment, but you'll probably get better adivce from somewhere like this...

http://www.keratoconus-group.org.uk/

All the best,

Dave

 

[freecybermag]

Hi Jay

I have a friend that is a doctor and writes for my magazine. Is it ok for me to send him you're post and ask him for his view/commenst etc?

He is retired now but has been in the practise for over 35 years.

Cheers

Chris

 

[clairemackaness]

Hi Jay, we've already chatted on MSN today, so you know my thoughts on this.

Love and big hugs

Claire
xx

 

[ink4-u]

please do freecybermag

that would mean a lot to me.

 

[Jayne]

Hi Jay, save and have the op done, your eyes are more important than money. If I didn't have the money i'd borrow it.

I hope you get it all sorted and save your sight.

Best Wishes

Jayne

 

[ink4-u]

if i could borrow it i would have it in my hand now. thats the problem i face. knowing that my sight will get worse month by month is horrible. i dont think its really hit me yet, but i will find a way i always do.

 

[creacom]

Hi Jay

My business partners step father has this and another eye condition and has done for many years now.

Ill PM you with some info.

Keep smiling......

Jacqui

 

[freecybermag]

Hi Jay

Got some stuff to e-mail you from the Doctor. Can you PM me your private e-mail so I can forward it please.

Cheers

Chris

 

[crus]

Sorry to hear of the eye ppoblem,

my girlfriend has two eye conditions and is unable to drive as her eyesight is so bad, so I drive everywhere and can sympathise.

In a similar way, can you look at reducing the strain on your eyes to slow the process down?

A friend of mine uses a mac with speech rec and spoken alerst combined with a projector and touch sensitive white board. Its simply amazing, if he needs to lok at the screen its 6ft by 4ft in front of him, but most of the time emails are read and written by voice. He has found this has changed his life.

Hope this may offer some comfort and assistance.

D

 

[easyasit]

i know we chat frequently Jay, as i say lets get to work on that project we were talking about.

Al

 

[ink4-u]

thanks for all your concerns, they mean a lot to me. unfortunately there isn't much that can be done, time will just tell. it would stop progressing any day now and i really hope it does but it would be a miracle if it did i have been told. anyway illness is a fact of life we are all lucky if we dont encounter something, i got picked for this and this only i HOPE. but im going to look positive and win!

it has made me look at things differently especially how you just get up put of bed and expect to see everything with no thought. it has also made me think about a donor card, i never carried one because i didn't like the thought of being cut open but now i may need a cornea donor i have decided that i should carry a card and if i go and i can help someone else i should do that.

Cheers
Jay
And thanks for the info some of you guys sent me!

 

[confused]

Hi,
I'm really sorry to hear about your condition, I cant begin to imagine how it must feel to be given such news. If it were me, from what I understand about it I would definately save for the op, even if it meant selling everything I owned. But WHY do YOU have to pay? why cant the NHS pay for it?
I have a friend who is an optician, I'm probably seeing her over the weekend so I'll ask if she knows anything about it or has heard of anyone having the op.

CALV

 

[JustOneUK]

there are only 8 people in the world who do this, about 250,000 people have had it done but the long term affects are not known, would you save up and have it done?

8 people did 250,000 operations?

Absolutely you should save and have it done. No question. Borrow the money if need be, a 4.5K loan is nothing compared to your eyesight.

 

[MorethanWords]

I agree - I have really crap eyesight, absolutely terrible, and I am seriously considering laser surgery or contact lens implants. I would rather pay than have my eyesight deteriorate further.

You should ask your doctor to refer you to Moorfields in London, they can sometimes do such procedures at NHS cost rather than private cost. I think you can only go there by referral from your doctor.

All the best mate, chin up.

xx

 

[easyasit]

I agree - I have really crap eyesight, absolutely terrible, and I am seriously considering laser surgery or contact lens implants. I would rather pay than have my eyesight deteriorate further.
You should ask your doctor to refer you to Moorfields in London

xx

As a kid i had not end of problems with my eyes. A squint for one, tat was operated on at Moorfields eye hospital.

In truth i have been a specticle wearer most of my life now. But my vision does continue to deteriorate.
My optician advsed the next perscription down will mean bottle tops for glasses.
This is where i draw the line, laser surgery it is, i am not wearing those things.
Besides not only this but it would be nice to live a part of my life without Specs

As for the above, well I know Jay qute well, and have spoken to him on this. He is doing all he can to raise the money for the treatment.

not only this but i thnk he like claire should be commended for their courage.
Jay is even considering starting up a charity to assist those with a similar condition to himself. Its a brave thing to do i think esp wen one notices their vision degrade almost daily.
Once he has the blueprints for this in place, i am sure he will tell us more.

Al

 

[honeypot]

Sorry have absolutely nothing to do with the business world, but just wanted to say that I have kerataconus too- have been diagnosed since 2001. My vision is still deteriorating but very slowly and I have recently been fitted with some contact lenses which massively improve my sight.

All I can say is try not to think about it, live each day and keep in regular touch with your eye specialist. I know it's tough but there is a lot that can be done to improve your vision.

Rachel

 

[Urban Space]

Jay save up for the operation! What use is money once you're dead?!

Liam

 

[ink4-u]

you are right, the one thing about KC i have to highlight is its different in every person. Some people progress slow and others fast. Im having the operation thats for sure.

 

[Faith28]

I have to reply to this.

Can I ask my husband if he knows how he can treat this? My husband is an alternative therapist specialising in herbalism, iridoliogy, nutrition and homeopathy.

He is really good. I'm not making any promises but I just wonder if you've looked into alternative therapy. I believe that there is a cure for every ailment.

Of course this type of medicine is called complementary medicine which means if you have to have the operation then have it. Like everyone says borrow the money if need be.

Wishing you well very soon

 

[ink4-u]

you are welcome to ask him, but due to the nature of the problem i really cant see anything.

Ironic or what SEE anything

 

[Admiral Collections]

Posting so late isnt going to help you. Give your eyes a rest!




Nic :wink:

 

[CG Effect]

http://en.wikipedia.org/wiki/Keratoconus

Hope this helps