Positive Thoughts Needed!

[Kaimi I]

Hi,

I'm new and I just wanted to share, and ask for some support.

I'm off to Moorfields tomorrow morning after having coped without any aids for nearly 5 years now, I was first informed that i had KC at the tender age of 16 by an optom in Oxford Street, I recall this as one of the most painful and unecessary expeciences of my life. I was told that I had KC and that I would go blind within two years, naturally in a state of complete shock and devastation I cried all the way home, to this day I'm not sure how I made it home. Anyway after that I spent the next 4 or five years waiting for the day to arrive, thankfully it didn't and still hasn't. But what I was left with was many years of fear and misconceptions about KC and it's effect. In 2000 I had a very frightening scar when I thought the day of blindness had arrived, and i sat in my house all alone to scarred to face that which i had been waiting for.

A freind took me to casualty at Moorfields and they told me that if I had waited much longer to get to them I might well have gone blind because I had a lot of fluid in my eye and that was what was causing my loss of vision.

They took me in hand, did some tests and confirme that I had KC and explanied that it was highly unlikely that i would go blind, the care, attention and proper information was so amazing and touching I spent most of my time in casualty crying from sheer gratitude. They arranged for me to attend the RED clinic, and then the dreaded RGP's came out, it took two visits before they could even get anything into my eyes, let alone fit anything!!!! But eventually I relaxed and was fitted with RGP's but it was no great love affair I can tell you, they were like having a foreign object floating around me eye, after a many more visits and many more sizes I finallay left some that were semi comfortable but it didin't last, I found them far too intrusive and I couldn't adjust to them. I really did try I promise I didn't just give up at the first hurdle I try for a a year or so but they didn't work for me.

So, almost 5 years later at the even tenderer age of 31! I will be going back to Mooofields to see how far technology has come, I am hoping that I will be able to take advantage of some of the new treatments I've been reading about recently as I really can't go on with out any aids any more. I've not been able to drive because without any aids I suffer from bad glares that make it almost impossible to see at night.

So I am thinking positively and I am hoping that I will get some help tomorrow as I need to learn to drive for my new job.

Thanks for reading this.


Kaimi

[GarethB]

Kaimi

Welcome to the forum and sorry to hear your story.

It is amazing people even 5 years or so ago were told they would go blind. It is true we can get to the point where we are clinically blind, but that is a whole different thing.

Lens technology has come a long way and you will often read about RGP lenses which is very general as there are all sorts of different styles. There are now soft lenses for KC and many here who found the RGP lenses very uncomfortable find by wearing a soft lens to act as a cushion and then an RG on top is extremely comfortable, there are hard lenses with a soft skirt (soft-perms), scleral lenses which look herendous, but those who have them say they are very comfortable and even soft lenses specifically for KC.

Surgery has come along way, there are intacs which in its simplest terms is scafolding for the cornea and gives it support so making the cornea more fottball rather than rugby ball shaped. The newest of all is corneal collegen cross linking with rhiboflavin (C3R).

Any surgery you read about including grafts is aimed at producing a corneal surface whereby vision correction is easier using either glasses or contact lenses. Having said that, most of those who I know that wear lenses post op find lenses more comfortable than they used to be due to the improved shape of their cornea.

London area has regular meetings and social gatehrings, so if you go to the home page and go to contacts, you can register with the group and get our regular news letter and notification of local meetings and social events too. You can also get loads of information on KC, help you can get at work, confrence transcripts and DVD's which all may be useful.

You will be pleased to know from our expereince most optoms are the exact opposite to what you have experienced.

Regards

Gareth

[tadiehatley]

Hi I have just had a similar experince about 2 weeks ago I was told I would lose the sight in my right eye... and was in a bit of state to say the least..... but having been on this site and read the info Ann sent me I feel so much more postivie. The info I was given 2 weeks was all worng..... I gave up on R.G.Ps about 6 years ago I just sort of played with them, so u did better than me!!!! And I am just about to try them again, after I have had some laser treatment for a different eye problem... I am sure u will ok, and I have been told lens are so much better now... I am sure u will ok and I will be thinking of you... I found so much support form this www site I hope u feel supported to good luck

[Anne Klepacz]

Hi Kaimi and welcome!
Nothing to add to Gareth's comprehensive post, except to say the next London meeting is on 27th Oct at Moorfields, so do come along if you can. And do contact me to join our postal mailing list.
All the best for tomorrow
Anne

[BusyLizzy]

Hello Kaimi,

I hope your upcoming appointment is fruitful.

Like you, intially I found that I had a great deal of difficulty wearing the RGPs the hospital eye clinic tried so painstakingly to fit. After four years of trying various lenses, and not managing to wear them for much longer than 30 minutes, they did finally find one which was tolerable.
They eventually conceded that I was allergic to the lens material.

Now I have moved onto an old fashioned PMMA lens, with which I can get 6 hours' good vision (not 20/20, but better than 6/20 unaided). It is the one type I am not allergic to. They're not often used now, for various reasons, but in my case as current management they're okay.

I wish you well.