Quicktopic posts: Jun 2003

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

Click on the forum name, General Discussion Forum, above.

Moderators: Anne Klepacz, John Smith, Sweet

Dominic

Postby Dominic » Wed 18 Jun 2003 7:28 am

This is a message for everyone who has KC and can get to London to help in the trials that are being conducted by Marine at the Contact Lens Research Consultants (More info is on this websites home page). I have been today, and what they are doing is brilliant. They are trying to get soft lenses for those with KC which will really help us all and make life so much easier. As KC is pretty rare they need all the volunteers they can, so try to help if you can.

Thanks Dominic

Jonny

Postby Jonny » Wed 18 Jun 2003 9:10 am

Hi,how would you rate my prescription?
0/-0.75 * 110
0/1.00 * 70

Is it good, bad or ugly?
I waiting for a contact lens fitting!
Thanks.

Andrew Bosanquet

Postby Andrew Bosanquet » Thu 19 Jun 2003 6:44 am

For those of you, like me, who are struggling with small lenses, and are considering sclerals, this article just published makes good reading.

Does anyone have access to the pdf files of articles in the medial journal ‘Cornea’?

Andrew

Abstract: GP Scleral Lenses Can Help When All Else Fails
In describing the vision-correcting and therapeutic benefits of GP scleral contact lenses in managing irregular corneal surface disorders and ocular surface diseases, researchers found that scleral contact lenses can provide successful and safe visual and therapeutic solutions for ocular conditions when conventional contact lenses and medical treatment have failed and where surgery is undesirable or contraindicated. They reviewed the charts of 48 consecutive patients (66 eyes) whose management included the use of GP scleral lenses and found that the most common indication for fitting the GP scleral lenses was keratoconus in patients who had to stop wearing other types of corneal lenses (44 eyes, 75%). Other indications included extreme corneal irregularity after penetrating keratoplasty, nonhealing corneal ulcer, postoperative dry eye syndrome following LASIK, severe exposure keratitis and acid burn. With a mean wearing time of 16.2 hours each day, 91% of keratoconus patients achieved visual acuity of 20/40 or better.

Segal, O; et al. Scleral Contact Lenses May Help Where Other Modalities Fail. Cornea 2003 May;22(4):308-10.

ELIZABETH

Postby ELIZABETH » Thu 19 Jun 2003 4:05 pm

Thanks for a great conference. It was good to meet people from the last conference and to meet new people.
Do people pay for contact lenses that they get at the hospital? I have to pay £46 for each lens that I need, and I usually need a pair each time, which seems expensive.
People on benefits dont pay at my hospital.They also get free sample solutions if the optician has any available.
Is there anybody in Scotland interested in starting or getting involved in a support group.(emair@supanet.com)

Carole Woodruff

Postby Carole Woodruff » Sat 21 Jun 2003 10:16 am

Conference

Ditto all the previous comments re- the conference. Great to meet people who understand what we're going through.

REGARDING STERILE NON-PRESERVED SALINE IN PODS FOR SCLERAL LENS WEARERS.

Ken has posted a message regarding the above on the main web page. It seems both amidose saline and steripod blue saline are not currently available due to manufacturing problems. My GP usually prescribes steripod blue but last time the pharmacist gave me pods of SODIUM CHLORIDE TOPICAL IRRIGATION SOLUTION which is exactly the same stuff but a different manufacturer - Generics (UK) Ltd. Boxes are 25 lots of 20ml pods just like the steripod blue so I hope this info is of help to those of you who are experiencing difficulties! You shouldn't need to use the normasol sachets!

Gillian

Postby Gillian » Sun 22 Jun 2003 9:16 am

Andrew - thank you very much for the information on scleral lenses. It was very interesting and encouraging.

Jessica

Postby Jessica » Mon 23 Jun 2003 9:09 am

Hello everyone,

A very interesting website, and discussion board.

I'm having my first experiences with scleral lenses. I got them yesterday, and the vision with them is excellent (better than with specs), but coming to try and put them in today, I've had problems. Four 10:10 pods, and about ten tries later, I can get them in, but not without air bubbles. How much did people here with sclerals have to practice before insertion became a natural, bubble-free process?

Thanks for your help!!
Jessica

Lesley Kinnaird

Postby Lesley Kinnaird » Mon 23 Jun 2003 11:56 am

I have been wearing scleral lenses now for about 3 years in my left eye and a year in my right eye. I think it took a couple of months before I could put them in without getting bubbles. can make do if I get a tiny bubble if it's any bigger, forget it I have to take it out which can be very annoying. also i often forget to put them in BEFORE putting make up on then you have all the solution running down your face and you have to start again DUH. The other thing I would say is take them out and give your eyes a rest as often as you can!

Gillian

Postby Gillian » Mon 23 Jun 2003 1:25 pm

Jessica it has taken my a few months to get used to sclerals. I now can put them in after just a few tries - but still it is difficult.

Lesley - Sadly I find I get a tiny bubble after about five hours - does anyone else have this. Make up seems to be not on with sclerals as, if I have to take them out I can't re-insert them with make up - impossible. Sometimes the little bubble does go - but while it is there is is very annoying and I 'see' it all the time. I usually wear corneals but it seems at this time of the year I get some sort of allergy under my eyelids which makes wearing them painful. Does anyone else get this and what do they do about it? I then wear sclerals but I don't see as well with them. I get this sort of feeling that I am only half around - can anyone relate to this? It is a strange feeling which makes me feel a bit miserable and remote. If anyone can give me any advice I would be most grateful.

Francesca

Postby Francesca » Mon 23 Jun 2003 1:59 pm

Hi everyone, I have had KC for at least 13 years now but have been unable to wear lenses as my eye waters a lot and I have not been able to cope or get a good fit. I have today been recommended by my opthalmologist to see the hospital with a view to seeing if I need transplants - I drive for a living so am very worried what will happen if I have the grafts - anyone out there with similar experiences - I cannot get good sight with glasses any more and am living in a permanent fog!


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