To all who have joined this forum recently

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

NickDash
Optometrist
Optometrist
Posts: 13
Joined: Thu 27 Aug 2009 8:34 am
Keratoconus: No, I don't suffer from KC

Re: To all who have joined this forum recently

Postby NickDash » Wed 01 Dec 2010 2:44 pm

It is of great interest that I monitor this forum and how my profession seems to fall so short in managing keratoconus.
There are many strategies to management of the condition and only the mainstream traditional methods seem to be adopted.
The options of Specialist Soft Contact Lenses such as Kerasoft and Aculens for KC seem to be overlooked.
The use of Corneal Cross Linking (C3R) is not readily available in the UK unless you pay privately.
Whilst part of this is the resistance to change in the NHS part is due to the lack of understanding from the professions of Ophthamology and Optometry.
Across the world, it would seem that both the above options (so called soft options) are the gold standard in treatment of KC.
What can we do to move things forward in the UK?
Perhaps a nationwide specialist clinic purely for KC is needed or we will be resigning another generation of patients to substandard care and poor/degrading vision.
After 20 years of working as a corneal specialist (NHS and private clinics), perhaps it is time for me facilitate this.
This will be my goal for 2011.
Nick Dash

User avatar
Anne Klepacz
Committee
Committee
Posts: 1985
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Wed 01 Dec 2010 4:52 pm

Hello Nick and welcome to the forum!
I'm sure everyone here will be supporting you in any efforts to ensure that all KC options are explored and made available to people. That's our mission too! We do everything we can to make sure that all our members and forum users know the full range of contact lenses now available for KC and regularly invite optometrists and ophthalmologists to update us on the latest treatment options at our regional meetings and conferences. And you've probably seen a recent post on CXL where we were asking members to tell us about any hospitals offering this on the NHS (sadly, it seems, very few so far). Standard rgps work well for many people, but for those who can't tolerate them, it's often a struggle to get an alternative. (Though I think optoms can often guess which of their patients are KC Group members when they come armed with a list of options they want to discuss!)
So thank you for a thought provoking post.
Anne

o0omaco0o
Contributor
Contributor
Posts: 14
Joined: Sat 08 Jan 2011 12:23 am
Keratoconus: Yes, I have KC
Vision: Other
Location: Northern Ireland
Contact:

Re: To all who have joined this forum recently

Postby o0omaco0o » Tue 11 Jan 2011 2:51 pm

Hi,
I have just been diagnosed with Kerattoconus. Waiting on an appointment for the hospital and don't know anything about it at all! I just changed optician and she was a little in shock that my last optician hadnt picked up that I had keratoconus. I thought that my right eye was just poorer than the other as no matter what glasses I had been tried on through the yars I still couldnt even see one letter on the chart! I can't wait to get the hospital to find out more, my optician had just told me that she feels the the right eye would no longer be able to use glasses and that it was advanced s the hospital would be better to advise me and my left eye is still at early stages. I have been reading up a lot information (which at this stage I know I probably shouldnt have) and to b e honoest i havent a clue what is available. Are there many people from Northern Ireland who use this forum?

Everyone here is fantastic, ive been reading a lot of posts and getting a feel from the forum and would like to say thank to everyone already as I already feel more at ease!
“Love isn't finding a perfect person. It's seeing an imperfect person perfectly.”

Sam Keen

User avatar
Anne Klepacz
Committee
Committee
Posts: 1985
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Tue 11 Jan 2011 8:10 pm

Hi and welcome to the forum!
We do have some members in Northern Ireland, so I hope some of them will see this and say hello. It's good you now have a hospital appointment coming up. Specialist contact lenses for KC should improve your vision a lot, so I imagine that's the first option the hospital will explore with you. It's not always easy to fit a KC eye, so be prepared for several appointments and time to get used to lenses. But hopefully they'll make a big difference, though if you've been reading through posts here, you'll know there are now other options for people who can't get on with lenses. Just take one step at a time, and I'm sure you'll find a lot of support here.
All the best
Anne

o0omaco0o
Contributor
Contributor
Posts: 14
Joined: Sat 08 Jan 2011 12:23 am
Keratoconus: Yes, I have KC
Vision: Other
Location: Northern Ireland
Contact:

Re: To all who have joined this forum recently

Postby o0omaco0o » Tue 11 Jan 2011 10:36 pm

Thank you Anne.
“Love isn't finding a perfect person. It's seeing an imperfect person perfectly.”

Sam Keen

STEWART
Newbie
Newbie
Posts: 2
Joined: Thu 13 Jan 2011 4:43 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby STEWART » Thu 13 Jan 2011 5:03 pm

Hi All

I have just been recommended this website by my eye consultant for information and guidance on KC so thought I would register today and say Hi. Wish you all well and say thanks in advance to those who spend time putting this site together in helping others.

Regards
Stewart

User avatar
Anne Klepacz
Committee
Committee
Posts: 1985
Joined: Sat 20 Mar 2004 5:46 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby Anne Klepacz » Thu 13 Jan 2011 5:23 pm

Hi Stewart and welcome!
Are you managing to get good vision with glasses or are contact lenses being recommended for you?
As it says at the beginning of this thread, we're not only a website but also have a postal mailing list of members living in the UK. So if you'd like to join that and receive regular newsletters from us, conference DVDs and details of members meetings just e-mail your postal address to anne@keratoconus-group.org.uk
Membership is free, although donations to help us cover our costs are always welcome!
Anne

STEWART
Newbie
Newbie
Posts: 2
Joined: Thu 13 Jan 2011 4:43 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby STEWART » Thu 13 Jan 2011 5:44 pm

Thanks Anne for the introduction

Went to hospital today for another appointment who recommended that I remain with my current glasses for the time being but contact lenses may be an option in the future pending check ups every 6 months to monitor. They said that Im a '2-3' in both eyes - Im new to all this so sorry if I sound a bit 'green'. I am interested in all that your group has to offer so will check out contact details.

Thanks again.
Stewart

dnhrudi
Newbie
Newbie
Posts: 3
Joined: Mon 31 Jan 2011 4:53 am
Vision: I'm coping with no aids

Re: To all who have joined this forum recently

Postby dnhrudi » Mon 31 Jan 2011 5:29 am

Hi,
I'm David, and i was diagnosed 16 years ago in the UK, but have been expat, living in Cambodia doing development work since 2000. Though my eyesight is not great, I get by with specs and not too much to compain about as my condition has been in remission since I relocated to South East Asia. That is until symptoms started again about a month ago. Out of sight out of mind I guess but that's why I decided to join your excellent forum now.
Now I know I'm not UK resident, but in the absence (inevitably, developing country, civil war etc) of a local forum, thought I would go ahead and register here. Hope its cool.

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7707
Joined: Thu 15 Jan 2004 8:01 pm
Keratoconus: Yes, I have KC
Vision: Other
Location: Scotland

Re: To all who have joined this forum recently

Postby Andrew MacLean » Mon 31 Jan 2011 7:20 am

David

Welcome to the forum. I think that you are the first member in Cambodia, but we do have people from all over the world who post here.

Congratulations on the work you do. It is always good to know that there are people out there doing good work.

Please keep us posted on your condition.

Every good wish.

Andrew
Andrew MacLean


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