UK Keratoconus Self-Help and Support Association

Hi Everyone
Just wanted to say how great I think this website is.

I've just turned 29 and was recently diagnosed with KC. I was short sighted anyway and I had noticed that my vision in the last year had really got quite bad. I just put it down to tired eyes, long hours in the office and probaly requiring stronger glasses/contact lenses.

When I was told I had KC in both eyes, I 'dont think I really understood what it meant. I am a patient at Moorfields, so I know I'm in good hands and although they have been really helpful, I've founbd this site more helpful on a personbal level. I've read people's stories and then I think to myself, "that is exactly how it is for me." A lot of my questions have been answered on this discussion forum. Its good to know that there are other people I can talk to about this and who understand how I feel.

I was a bit depressed the other day as my vision was not great and I felt vey frustrated that I can't see properly but I'm getting my first pair of RGP lenses on Thursday, so I am very excited. Although I shall miss my daily disposable soft contact lenses, I can't wait to be able to see the world in the way that everyone else does.

So basically, that was all I wanted to say...for the time being at least.
Thanks everyone

Mandy

Welcome Mandy!

I take it you will understand keratoconus a little better now, but here's a link explaining it, but there is also great info from the home page on this site.

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

All the best with your new lenses, let us know how you get on.

Hi mandy and welcome.

I also attend Moorfields and as you say, I think we are in good hands.

I agree that the forum is a source of very useful information and support.

I never new what questions I should be asking when I go to MEH but I have now prepared a list for my next visit thanks to the info I have gleaned.

Good luck with the new lenses

Hi Mandy, you will find lots of support here when you need it, welcome from me to,

Hi
Thank you for your messages of support and welcome.

I got my first pair of lenses on Thursday. I can't believe how much I've missed out on, its quite frightning really.

At the moment I am building up my wearing time and they do feel slightly uncomfortable but not as bad as I thought. I did struggle a bit trying to take them out. I can take soft lenses out, no problem, but initially I just couldn't take out rgp lenses and they are meant to be easier! But I'm developing a technique now! I think.....

I'm going to have a moan now, do any of you find that some of your friends are not very understanding about KC? I was organising a mini Uni reunion this weekend and of course its only day 3 of wearing rgp's so I wanted to meet for lunch somewhere near my flat so that I could run back and take the lenses out. One of my friends, said "for practicalities, can't you start wearing them after the weekend so that we can meet somewhere else?" Now maybe I'm being a bit over sensitive but I don't think he understands just how miserable I would have been if I couldn't wear my lenses even if it was just for 3 hours. Anyway, that is enough of my moan. All my other friends have been great.

Cant wait to be able to wear my lenses for most of the day!
M

yeh i find people are pretty insensitive, as you put it, about it. i carry my lil lens case thing around with me so if ever i need to take them out i can. my technique is real simple, finger on contact, pull it down, i don't know if its very good for you, but it works.

i think you'll find that as time goes on this year and the pollen count etc decreases you will find it easier to wear your lenses for longer.

KC is a hidden disorder. We tend to show our best face when we are out. Because of practicalities that is when we need our best vision so that is when we wear our lenses. So we look like we see well and we dont even have to wear glasses. They dont understand that vision with glasses is basically useless. I wore piggy backs for a while (most succesful I ever was with lenses) I managed to get them up to about 15 minutes before they flipflopped in my eye and the soft lens was on top of the rgp. But the vision was amazing. By the time I had my grafts I was walking in front of cars I simply did not see. You manage and it is amazing how well you manage, but it is tiring, and frustrating. If you get good lens wear times the general public dont see the bad, they just see a person without glasses who seems to see well.
I still think they see the lens as a vanity thing they dont understand that glasses do not do the job no matter how strong they are. Give your friends time they will eventually understand but it is a long history of glasses being able to be made stronger and contacts for looks only beliefs they have to overcome.

It's interesting to hear you are a dab hand with the daily disposables but the RGP are difficult.

The reverse is true for me although I have been wearing RGP lenses for almost 22 years and soft daily as part of a piggy back for almost two weeks.

I find that this is the most comfortable lens wearing I have ever had. As the daily acts as a cushion, also the RGP lens tends to stick.

I have also noticed my night vision has improved. Good luck and read the site, I only became aware of it through my wife coming with me to Moorfields.

Hi Mandy,
I too have been recently diagnosed. I can identify with all the points you have made. How long did it take you from diagnosis to lens fitting. It is 12-14 weeks up here. I know it will be worth the wait.

Mandy,

Yes we can be oversensitive and why not and yes friends can be ignorant of a disiability that they can not see.

I find passing over the supprot groups KC fact sheet really useful. My daughetr too is really good at explaiing KC. My wife and I spent weeks thinking of the most simplistic way to explain it too her 2 years age when she was 5. Now if anyone asks, she is straight in giving them a lesson in KC.

Another way is to geve your friend a pair of glasses and smearing a fine layer of anything from handcream to greese to make the view through the lenses quite blurred and slightly distorted. People soon understand why it is so improtant to you being able to see. It will look far worse to them, because their brain will not have adapted quite like yours has.