Quicktopic posts: Jan 2003

[Abigail]

Hello

I have just got some new scleral lenses from the hospital. They gave me some cleaner and two types of saline to take home. From reading some of your old posts I understand that you can get these on prescription.

Can I get a prescription from my Doctor, and if so what reason should I give her when I ask?

Thanks in advance for any advice. I've not posted here before but read the messages and find it a great source of help.

Abbey.

Happy New Year to everyone!

[Janet Manning]

Hi Abigail,
You may not be able to get the same saline on prescription from your GP as you can get at the hos[pital. I get STERIPOD SALINE from the GP on the basis that I wear unusual lenses that require large quantities of saline for rinsing and inserting. You cannot get Amidose on prescription except from the hospital.

The cleaner I buy in the supermarket - Miraflow, only about £3.75, so less than a prescription. All contact lens wearers have to buy some sort of cleaner.

I have bought an annual pre payment certificate for prescriptions, as I need sodium cromoglicate every month as well as the saline. It's £89 for the year, so a saving of about £50 over the year, without any other prescriptions you may need.

Hope this helps.
Best wishes, Janet

And HAPPY NEW YEAR TO EVERYONE!

[Mike Oliver]

Reply to Robert Gavin of KCenter from Mike Oliver, Chair KC Self Help and Support Association.
Your organisation has chosen not to respond to specific requests to clarify exactly what is being proposed. Until it does so we have no real idea what it is you are asking us to consider.Nobody is playing hard ball or any other game.No approach has been made to us except by e mail and no message received clarifies anything. I understand from your latest message to Anne that you believe she has blocked some communications from you. This is nonsense-- those messages were received in a format which gives no clue as to who sent them. Without this knowledge Anne was unwilling to open them for obvious and underatandable reasons.The latest message sent to Anne by yourselves and copied to a number of us can only be described as a patronising and offensive tirade of epic proportions and clarifies nothing.We shall be replying to it but the time we are wasting on all of this helps noone. We are more than happy to work with anyone towards raising awareness of KC and helping those affected by it. If you have constructive proposals or suggestions to this end then please make them--unless we know what they are we cannot respond. I presume you are aware that this page is intended for Group discussion and is hardly the right forum for this sort of correspondence. Your posting left no choice but to respond here.My apologies to everyone else-- I am finding this whole episode both bizarre and frustrating.

[listener@umbilical.demon.]

Reply to Robert Gavin of KCenter from Mike Oliver, Chair KC Self
Help and Support Association.

I understand from your latest
message to Anne that you believe she has blocked some
communications from you. This is nonsense-- those messages were received in a format which gives no clue as to who sent them.
Without this knowledge Anne was unwilling to open them for
obvious and underatandable reasons.


Quite apart from the obvious risks of email viruses, I would
have hoped that anyone claiming to be *from* a group centred
around an eye condition, and addressing themself to members of
another such group, would have enough knowledge to send their
communication in a format as accessible as possible (ie. to
adaptive accessibility equipment) and not in some format that
may well be inaccessible to people with eye conditions.

Rosemary

--
Rosemary F. Johnson

["The Mediator"]

It sounds like we need to stop and listen for a minute - there may have been some unfortunate initial communication breakdown but if you read the link below all is explained and to me this sounds like a positive move - Kcenter are Non Profit and if the US site is anything to go by they have got a good presence and some high profile involvement:

http://www.kcenter.org/news/4.html

Come on lets not fight over KC, lets combine forces and crack this disease or atleast make it easier to live with!

And for the record I think we SHOULD discuss such things that could help the KC Community in public on this open discussion board. Lets stop being old-Britain and join up with our colleagues in Europe on this one!

I am not saying we throw away caution but we should ask what do we have to lose.

[harpomatrix@yahoo.co.uk]

Me Again! I'm probably getting annoying now.

5 weeks 3 days

Still no improvement.

Hopefully something postive will happen with the hydrops. I've got an appointment on Thursday 16 Jan.

At the moment I'm trying to revise for my uni exams that I have in Jan. My concentration span is shorter and I'm getting frustated quite fast when it comes to revision. Its more difficult with hydrops. Just still annoyed because when I first was told I had hydrops I figured that by the end of dec I would have some significant improvement.

Hopefully I'll start lookin like a normal person again.

[Neil Baghurst CFK Europe]

Deleted by author 03-01-2003 07:03 AM

[Robert Gavin (CFK)]

Dear "The Mediator" and others:

I am willing to team up with the UK organization and believe it would greatly benefit the KC community. I am offering the UK foundation financial support as well as our resources. We are the largest keratoconus organization in the world, but I know it takes a "team effort to cure keratoconus." Therefore, if the UK foundation joins our forces, this will bring us a day closer to a cure.

Best regards,

__________________________
Robert Gavin
President

Center for Keratoconus
1411 W. Covell #106-206
Davis, CA 95616

Tel: (877) 469-5508
Fax: (877) 469-5508

email: robert@kcenter.org

Worldwide nonprofit organization dedicated to curing keratoconus.
http://www.kcenter.org

What is keratoconus?
http://www.kcenter.org/news/what_is_keratoconus.html

Visit our message board with advice and 1000's of topics.
http://messages.kcenter.org

Donate a car to help us restore vision and receive a tax write-off.
http://www.carsforsight.org

Donate a gift (appliances, electronics, furniture) to help fight KC.
http://www.giftsforsight.org

[umbilica@umbilical.demon.]

As regards the KCenter discussion:

1. In case there is any confusion, I'll clarify something: I am not now, nor have ever been, a member of the committee of the KC group. I know nothing of any dealings between it and the
KCenter (in any country) other than what has been posted here.
I am an ordinary (?) partially-sighted person who receives the
discussion area postings as an email list. (For that matter, I
am not a computer expert either and have no idea what AIM is,
either). Any comments I post in reply are my own only and do not represent any committee. If anyone has thought to the contrary, apologies for the confusion.

2. As an ordinary partially-sighted person listening to these
emails and unable to "click" on any URL they contain to reach a
web page (or on anything else for that matter), I am totally
baffled as to what this is all about and what KCenter might be
proposing. Maybe someone from KCenter would be good enough to
post here a quick summary of what they are suggesting, for the
benefit of us mere ordinary mortals?

3. Out of personal interest, and not representing any committee, I'd like to ask whether the KCenter is working entirely on the
"medical model" paradigm and addressing solely issues such as a
"cure" or medical treatment, or whether they also support the
social model of diability and are interested in working around
issues of discrimination and disadvantage caused by
unthinking/uncaring attitudes of ableist society. Just
wondered...

Rosemary

--
Rosemary F. Johnson

[Susan Mason]

Hello all and HAPPY NEW YEAR.

Harpo - Hope all goes well on the 16th Jan, my next appointment is the 17th Jan so hopefully soon we will both have some more info.

Rosemary - Thanks for taking the time to post me a reply, sorry it has taken me so long to respond. I live in Bolton and am attending a hospital in the same town. As for where do I work and what am I doing, I work for one of the countrys biggest banks (financial) and basically supervise a team of approx 30 staff. My job involves quite a lot of PC work, however I am not constantly sitting at the PC. As for them thinking I was best at home I have since found that that was more than likely just one individuals decision, what they thought best. I have now had two visits from the RNIB at Liverpool, both of which were very productive and I am due to go to Liverpool in the next month to look at equiptment which may make things easier for me. (I still feel like a bit of a fraud as at present althought very frustrating I am probably not as bad as many others and I very wrongly thought that the RNIB would only be able to help me if I was unable to see at all, the hospital certainly never suggested that I contact them)Several months ago (probably August) I asked quite a lot of questions about what I should expect etc and