Quicktopic posts: Nov 2001

[Sue Ingram]

Hi Kate, yep, the Sue and KC thing is very strange, isn't it? They all seem to be coming out the woodwork lately. How many more are out there?

Hi Kim, glad to hear that some progress has been made - its wonderful when you get a practioner who is more understanding (and patient!). Let us know if you ever get the 'fish bowls' and we can give you any help you need; your eyes will feel a bit 'full' when you first start wearing them but after a while,D of course"

[Lawrence Freeman]

Kim, that was my initial reaction to sclerals too. Fish bowls. For those that don't wear them, they look huge at first and you couldn't imagine putting them in. Mind you, I was the same when I got the RGPs. I couldn't bear the thought of 'poking my eyes out' when taking them out and the thought of putting them in made me wince. But when you have no other choice, you just have to do it, I suppose. Hope things go well. (I'm at the RVI in Newcastle tomorrow.)

[Sue Ingram]

Hi everyone, I have an appointment with Ken at MEH on 12 December. Is anyone else up there on that day? If so, perhaps we could wait together. SUE

[helen williams]

Dear Kim,

Thank you so much for your comments - feel relieved that soomeone knows what I am going through!! It was very helpful saying what you use for your eyes - I also use hydrocortisone cream on my eyes!! very naughty- but what else can you do. Have been to doctors today who said will get some allergy testing done for me - which is a start. I am hoping that my consultant will let me try soft perms also. It seems that you have been through a lot - hope it all goes well for you and thanks again.

[Janet Manning]

Just thought I'd add my experiences and solutions to the problem of eczema around the eyes and itchy eyes. I had these problems and conjunctivitis pre-grafts. Whilst using steroid drops on and off for 2 years following the grafts I was blissfully comfortable. About 3 months after I stopped the steroids, the problems came back with avengeance - I looked like a red panda and could only tolerate lenses for about 3-4 hours a day, leaving me partially sighted most of the time. I eventually used steroid cream for a month with some improvement, but was concerned about the long-term effects.

I have now had a course of acupuncture and use angelica ointment round my eyes. I know that some of these Chinese creams have been found to contain steroids, but I checked this out and was assured that this one did not. The cream is called WEIFUGAO. I get it from a Korean acupuncturist in Kingston upon Thames where I used to live - costs £8 per tube, which has lasted me 7 months so far! My eyes are no longer itchy - just as well as I am forbidden to rub after the grafts!! The eczema has gone and the cream keeps the skin round my eyes soft. I put it on at night only, to avoid getting it on the lenses.

My eyes are still red and I use sodium cromoglicate drops x4 a day to keep the allergic reaction down. The main thing is that I got sclerals 6 weeks ago and my vision went up from barely 6/12 to 6/6 and I can wear them as long as I like. This is much better than the max. 10 hours with soft perms. I also find them more comfortable.

I am also now able to drive at night which I could not do in soft perms because of ghosting.

Message to all drivers with problems at night. My GP informed me that even if I had passed a DVLA vision test to drive (which I did ) and was insured, if I had an accident and it was found that I could not see well enough my insurance company would not back me!! For the last 3 years, when I have been able to drive, I have had a self imposed curfew on night time driving.

If anyone would like further info on acupuncture or getting the cream, please contact me on:-
janetmanning@lineone.net

It's so encouraging to read all the messages on this page and see how others are coping.
Janet Manning

[Lawrence Freeman]

Dear All,
Just thought I'd drop a quick line about my hospital visit yesterday. They said that the condition may be slightly worse in my right eye than it was six months ago, but not so much as to cause the lens falling out as regularly as it does, (usually two or three times a day!) However, they did say that the last lens was a bad fit and that I shouldn't have been given it, so they apologised. I'm getting two new lenses, so hopefully after their "mistake", I'll only have to pay for one of them.

Janet - I don't suffer from eczema myself, but I can imagine that this cream must have been a welcome relief. I'm sure that the others on this board who also suffer from this will be trying this out. It's nice to see some fantastic news like this.

Keep smiling, everyone,
Lawrence.

[Catherine (Peterborough)]

Hi everybody. I've only recently been looking at the group and have found it really interesting to read all your messages. It's given me a much better understanding of some of the problems I experience which I just thought were 'normal'!

I have had KC since I was about 19 but it was only properly diagnosed about 5 years ago (I'm now 36 so I'll leave you to do the maths). I have also suffered badly in the past from eczema and have had two bad long-term bouts of itchy eyes (or Chinese eye as my Mum calls it).

I've sorted out a lot of my allergy problems (and in turn the eczema) by cutting out dairy products and being treated for candida, which included cutting out sugar. After a very difficult few years when I could eat hardly anything I found I was able to put some things back in my diet without triggering the eczema problems. I know it doesn't work for everyone but for me at least it made a huge difference to my life. Nowadays I keep the dryness and itching around my eyes away by using Calendula cream (available from most chemists) but also only apply it at night. This is also very good for re-hydrating skin that's getting dry through using steroids.

Have recently got my first scleral lens from Ken at Moorfields - for my right eye only as the other seems reasonably stable. We had some jokes about filling the lens with vodka shots and a friend of mine tried to sell tickets to people to watch me put it in, but I find it really comfortable - and - for those who are nervous - easier to put in than a corneal lens now I'm used to it! By the way I've also found the eye I wear the scleral in is much less sensitive and itchy than it used to be.

The biggest thing I've learnt by logging onto this group and going to Moorfields is just how lucky I am. I can still drive and work. So to all of you who are struggling more than me, or have more advanced KC - well done and all strength to you.

Sorry this is such a long message - I'm known for being talkative and it's so great to communicate with people who will understand! Hope it hasn't been too boring!

[Sue Ingram]

Hi Catherine, perhaps there is also a link between KC and being talkative (I believe I have the same problem!) as well as KC and Sues!

I would just like to say that I also gave up dairy products about three years' ago to help with the over-production of mucus in my eyes, which obviously interferes with wearing the lenses. (Dairy products are known to cause the over- production of mucus throughout the whole body and consumption does affect those with asthma and excema). This definitely seems to have helped me and also seems to have helped with the 'itchy eye' syndrome'; not that I have excema as such but both asthma and excema run in my family.

Like you, now that I have got dairy products out of my system, if I have the occasional piece of cheese (my favourite!)or chocolate then there does not seem to be a problem as long as I am not eating lots every day and continually keeping up the levels of diary products in my body.

Others might find this worth trying. I don't drink any milk at all now and I used to love it - I would drink pints at a time (apparently, they do say you tend to really like the foods you are sensitive to - wierd!). I do not miss milk at all now and have got used to soya milk; whatever helps the comfort-factor of my eyes is worth doing, I feel. Take care everyone. SUE