Quicktopic posts: Jun 2001

General forum for the UK Keratoconus and self-help group members.

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elaine -----dover

Postby elaine -----dover » Tue 26 Jun 2001 10:53 am

Hi there all 20-30yr old---oh dear where does that leave us old 45yr old!!!!!
although i am not in your age group!!! i may be of some use as i had severe eczema when i had my grafts done.Fortunately i am completely clear thanks to taking EPOGAM-a type of evening primrose oil prescribed by some obliging doctors.This oil has completely changed my skin which was permanantly dry and itchy and i was frequently in hospital,This is short as i am in a rush but let me know if you want anymore info.Elaine

sorry seem to have lost your e,mail add. Coffee was lovely and it was so good to have a 'and i do!' chat!
The makaton course was a hoot as i couldn't see her fingers untill lunchtime when i put my lenses in.Is there much call for signers who can't see i wonder!End of term caos looming must go.Elaine

Kim R.

Postby Kim R. » Tue 26 Jun 2001 3:37 pm

Ian and Freddy

Sorry for the late reply to your e-mails. I have to say a huge thank you to you both. I have always avoided asking my consultant about sunglasses as it seems a bit trivial. Well how wrong was I??? I'm so dumb, I hadn't even heard of polarised lenses. I have been searching shops and the internet since your replies and finally tried on a pair of Bolle polarised lenses today. WOW!!! The difference is incredible. I can't wait to get my own pair. I really can't thank you both enough for the info.

- Have been following your progress with interest and wondered how many weeks it takes after the op, for you to know what your final vision will be? How soon will you be able to drive?

Can I get Epogam without a prescription? My eczema is terrible around my eyes and I have a very unhelpful new doctor. Would my consultant be able to prescribe it? It sounds like a wonder cure.

How are you doing?

Nigel A

Postby Nigel A » Wed 27 Jun 2001 4:01 am

Thanks Steve I will give him a call


Postby elaine » Wed 27 Jun 2001 10:56 am

I'm not sure if Epogam is sold without prescription but it would be worth asking your dermatologist.My doctor in London was not keen either but here in Kent they seem more helpful.It's common sense though to try it as in my case the bill for steroids and hospitalisation must have been huge.I was permanantly bandaged up and the skin on my face was like a dried up crocodile but now people cannot believe that i ever suffered with eczema(the dried up crocodile effect is now due to middle age and divorce!!!).Keep pestering as my specialist was doubtful at first but his deputy tried it while he was away and i have never looked back. Good luck and let me know how you get on, Elaine.


Postby ianmetcalfe@cwctv.net » Wed 27 Jun 2001 2:50 pm

dear laura,my names ian im 29 yrs old,have KC in both eyes and two grafts.iwork as a printer.KC gets me into trouble sometimes! email me,ianmetcalfe@cwctv.net

On Sun, 24 Jun 2001 23:02:20 -0500 Quick Topic daily digest <qt-6-A46Jzt4sJAXLTWnJNHsx@quicktopic.com> wrote:


Postby KP » Fri 29 Jun 2001 4:55 pm


Have any of your had a problem with lenses and had to get a new pair as your current ones cause you problems (ie sore eye, cant put lens in, cant go to work?). Thats the situ I am in..was at Moorefields and have now been recommended Sclerals...which fitted fine and gave decent vision....however I got aletter today giving me an appointment to pick up the new Sclerals in September?!?!....At the moment I can only put in one lens as other eye is very red and saw.....and many days have to miss work as no lenses can go it...due to the RGP's scraping against my eye.......not sure what to do.......as if I fone them Im sure they will NOT give me one sooner as they would have originally if they could

What to do in this situ?

Ken Pullum

Postby Ken Pullum » Sat 30 Jun 2001 7:31 pm

Ian G’s researching (message 263) revealed a course program at which I gave a presentation entitled ‘Avoiding the knife’. Not my title, I preferred ‘Keeping away from the operating table’ Â…. a little less melodramatic, but with the same message that versatile contact lens management has much to offer. Lens design requires a balance between a shape with good enough contouring to stay on the eye and one that gives good enough vision. This is not a problem for a daily disposable soft lens, but the two goals are sometimes mutually antagonistic for keratoconus.

Epicon lenses were launched five or six years ago and withdrawn soon after. They were essentially flexible GP lenses, supposedly to make them more comfortable and fitting more forgiving, but they sometimes tightened up during wear. They were also large, which may have reduced glare, but restricted use to moderate keratoconus. Hydrogel lenses are large and flexible, comfortable to wear, but do not give good vision in keratoconus very often because there is no fluid reservoir to optically neutralise the irregular corneal shape. If a lens is flexible enough to be more comfortable than a regular GP lens, one presumes the visually enhancing function is reduced.

Epicon has been relaunched in the US, and I have read one US discussion group entry saying it is now the greatest lens ever made. There are always some people who find a particular design or concept works brilliantly, and there are also swallows in spring. When it is available in the UK, I am sure it will have its place, but unlikely to be a mainstream option. You could say that if just one person benefits, it is worth the effort, but manufacturers have to recover their costs so may see it from a slightly different perspective.


Lino Barzoni -BRAZIL

Postby Lino Barzoni -BRAZIL » Sat 30 Jun 2001 9:17 pm

My name is Lino,I am Brazilian, 30 years old.
Since I was 15 I know I have this cornea disease, KERATOCONUS. Since then I´ve tried several types of contact lenses to live with that. Unfortunately none of them were fit to me, I just can´t tolerate any contact lenses longer than 5 hours a day. My eyes hurt, I feel anxious, it´s terrible.
So I wear these glasses which help me very little but at least I am improving my vision......
Last year I heard about a surgery for patients with KERATOCONUS. It has been developed in Brazil since 1994 by a Doctor named Paulo Ferrara. This doctor found out accidentally a new technique to treat patients with KERATOCONUS before the transplant is required.
It is the implant of a little invisible ring in the cornea that is now known as FERRARA´s RING. I don´t know anymore details about this operation, but I know there are more Doctors now able to do this surgery. In Brazil over 400 patients have already tried this technique, and the success in such cases is around 85%. There are cases that the surgery just doesn´t work, for some reason they don´t know, then they take the ring out of the cornea and the person has his previous situation back again. The next step is the transplant then.
The good thing is the price, isn´t that expensive..... Around U$ 1200 each eye. The surgery requires one eye at a time, with 3 to 5 months in between.

But my Doctor said that 85% is a pretty good chance to work out! Also if I do that, my vision acuity will raise to 90%... He made clear that I won´t get rid of my glasses or contacts, but I will wear soft ones and my vision with them will be much better.
I have the phone number of 5 people who have done it, and soon I´ll talk to them to hear what it feels like and whether it was worthy it or not.
So if anyone knows any more info about it please just let me know. Let´s share information about this annoying problem that affects us and now is kinda being solved....
If anyone would like to know better please let me know. Reach me through my email: lbarzoni@terra.com.br

Best regards. Sincerely yours

Porto Alegre – Brazil

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