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

User avatar
Anne Klepacz
Committee
Committee
Posts: 2106
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 » Fri 16 Mar 2012 2:15 pm

Hello Chris and welcome to the forum!
And thank you for such a positive post. It's great that you have one eye with 20/20 vision. Fortunately, our brains are very good at blocking out the blur from one eye so having a non KC eye to do the work is good. And contact lenses do usually correct early to moderate KC pretty well, so hopefully you'll have a lifetime of mountaineering to look forward to!
Our members have done all sorts of things to fundraise for us in the past, but we haven't had a sponsored climb before. We'll be very grateful for anything you can raise.
As it says at the beginning of this (very long) thread, apart from running this forum, the KC Group produces various information booklets, DVDs and newsletters, and arranges meetings in various locations. So if you'd like some information from us, just e-mail your postal address to anne@keratoconus-group.org.uk
Meanwhile, have a great trip with your youngsters!
Anne

epik
Contributor
Contributor
Posts: 23
Joined: Mon 19 Mar 2012 8:33 pm
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: greece

Re: To all who have joined this forum recently

Postby epik » Tue 20 Mar 2012 7:12 am

Hello to all,


I am 20 years old, student in the Medical University of Athens (Greece) and I was recently diagnosed with keratoconus in both eyes.

I use glasses (astigmatism) and I am preparing to be treated with the so called “Athens Protocol”, by means of combined, same-day, topography-guided partial PRK and collagen cross-linking CLX.

I am glad to meet here so many "friends" and I want to thank all moderators for their great job,

See you soon,

Epik

User avatar
Anne Klepacz
Committee
Committee
Posts: 2106
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 20 Mar 2012 10:13 am

Welcome to the forum, Epik. Do let us know how the treatment works for you.
Best wishes
Anne

jsainju
Newbie
Newbie
Posts: 1
Joined: Fri 23 Mar 2012 7:34 am
Keratoconus: Yes, I have KC
Vision: I'm coping with no aids
Location: Nepal
Contact:

Re: To all who have joined this forum recently

Postby jsainju » Fri 23 Mar 2012 7:42 am

I am from Nepal and having keratoconus since 5 years now i have recently gone to Apollo hospital Delhi India and they have suggested Laser operation as a cure but doctor Reeta Gurung from Tilganga Eye centre Nepal said Laser operation should not be done for keratoconus I am in dilemma what to do or what not to please suggest something. if you have support for poor girl like me please help me cure it

User avatar
Anne Klepacz
Committee
Committee
Posts: 2106
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 » Fri 23 Mar 2012 10:16 am

Hello Jsainju and welcome to the forum,
Your doctor in Nepal is right - laser treatment makes keratoconus worse not better. There isn't a 'cure' for KC, but collagen crosslinking can stop it progressing and I'm sure there are clinics in India which do that procedure. And contact lenses correct or improve the vision - in the UK there are a variety of different contact lenses for KC. I don't know how many of them are available in your part of the world but you should be able to get something that would help.
Good luck
Anne

User avatar
eshark
Newbie
Newbie
Posts: 2
Joined: Thu 29 Mar 2012 11:04 am
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: Scotland

Re: To all who have joined this forum recently

Postby eshark » Thu 29 Mar 2012 11:33 am

Hi, my names Emma and I'm a 20 year old student from Scotland.
I was diagnosed with KC in my right eye just after turning 18, later I was told it is now my left eye also. I am actually currently studying a Technical Design course at the University of Glasgow and the troubles I'm having when it comes to the detailed drawing work is rather depressing - so depressing that I basically dropped out of my course for a few months.
I was fitted with RGP lenses last summer and I am still struggling to wear them. I go through stages every now and then that I can find them tolerable but most days they have a mind of their own.
I am determined not to let them effect what I want to do in life, but my case seems to be worsening, I don't know if this is my own fault because of how difficult I have been with the RGP lenses or if it's because my KC is progressing to worsen (something I have been told), but I am beginning to look into other treatments other than the RGP lenses.
It would be great if anyone who has gone for more advanced treatment to give me some advice on the matter.
It's nice to know I'm not the one out there...

Emma.

User avatar
Anne Klepacz
Committee
Committee
Posts: 2106
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 29 Mar 2012 2:06 pm

Hi Emma and welcome!
Have you been back to the hospital to see if your lenses can be improved? There are also other lenses apart from rgps which might work better for you. And for other options, if you e-mail me your postal address anne@keratoconus-group.org.uk I can send you our information booklet about KC and also the DVD of our 2009 conference which went into the various options in more detail.
I'm sorry you're struggling with your studies. Have you found the leaflet you can download from the homepage of this site 'Supporting Students with Keratoconus'?
www.keratoconus-group.org.uk/sitev3/publications.html
You should be able to get help at uni to make things easier for you.
All the best
Anne

michaellpl
Newbie
Newbie
Posts: 5
Joined: Mon 26 Mar 2012 7:18 pm
Keratoconus: Yes, I have KC
Vision: I'm coping with no aids

Re: To all who have joined this forum recently

Postby michaellpl » Sat 31 Mar 2012 9:10 am

Hi,

My name is Michael, I'm 27, now living in Poland and I was diagnosed with KC last year. Since the rapid progression scared the shit out of me I had Xlinking in november. From orbscans they tell me that you cant see the cone progressing but I can hardly believe that since the ghosting effect is getting worse. In general apart from the f.... ghosting effect which doesn't make me the best night time driver and the halo effect after Xlinking I have 20/20.

I have RGP now and it reduces the ghosting effect almost alltogether but due to the shape of my cone the lens constantly slides over my eye which:
1. is very annoying
2. lens often gets stuck under my top eye lid and is kinda hard to take off
3. i get a pretty limited "lens working zone" so when it slides away from the zone i cant see that well
4. halo effect is bigger

I'm going to my optician on monday to get another lens fitted: tip for my fellow KC, RGP candidates: before ordering your ask if the lens manufacturer has a returns policy, mine does so if they wont be able to find a lens that works for me I can return it getting 80% of whatever I paid for my RGP back.

I'm thinking about keraflex in 2 years(most likely in germany since the clinic in Cottbus, unlike vision perfection actually responds to emails) when we should have full set of data for 5 years since the first operated patients. I'd like to know more about topography-guided partial PRK, does anyone know when the first ones were performed and how does it "hold" after few years?
I had Xlinking in november 2011.

User avatar
Elizabeth Mair
Moderator
Moderator
Posts: 120
Joined: Sun 14 Mar 2004 4:56 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: East Kilbride

Re: To all who have joined this forum recently

Postby Elizabeth Mair » Sun 15 Apr 2012 8:37 pm

Emma,
As you are studying in Glasgow are you able to come to the Glasgow KC support group meeting on Saturday 21st April , 2-4pm at Strathclyde University Chaplaincy centre, John Street, near George square. It is the building opposite the student union. Our speaker is speaking about Nutrition and eyes , plus there will be opportunity to speak to others about their experiences.
If you send me a PM with your contact details I can put you on the mailing list and keep you up to date with whats happening in Glasgow.
(PS don't post your personal details as a reply message as the whole world will see them)

ginny077
Contributor
Contributor
Posts: 12
Joined: Fri 27 May 2011 9:45 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby ginny077 » Thu 19 Apr 2012 3:36 pm

Just an update on my condition.

Have left the bank as it made me totally depressed and finally found another job after eight months of being at home.
Now work as a health care assistant in a hospital. Have to drive, sometimes at night, which is a problem but love the job even though it is very hard work. Have met some lovely people and some lazy!!!!
My surgeon had discharged me but as I had problems with comfort and redness I turned up to some emergency clinics at my local hospital and now the surgeon has agreed to see me again for a "chat". I know there is not much that can be done now as a graft is the final process and I have also been told he plans to do no more grafts as he thinks they will fail aswell.
On a good day I can do most things but on a bad one, in which your eyes refuse to accept your lenses I am totally useless. I wish more doctors/employers would realise this. This disease SHOULD be recoginsed by all as I believe it is now becoming more well known. I wish to be known as partially sighted as my sight differs from one day to another. I would like to have a written explanation from my surgeon to my employers to explain about my absences, as the bank thought I was making things up, made my life awful and forced me into handing my notice in.
In the recent newsletter I received from you there was an article written by James which I found most interesting. I understood everything he mentioned. This article I intend to take to show my surgeon on 26th April.
I have also found that new my "duet lenses" still get very misty and greasy and only last for around one/two months before they need changing for new ones. This is quite an expensive way of buying lenses!!! :


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 23 guests