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
Lia Williams
Forum Stalwart
Forum Stalwart
Posts: 396
Joined: Thu 16 Feb 2006 5:27 pm
Location: Surrey

Re: To all who have joined this forum recently

Postby Lia Williams » Thu 25 Jul 2013 7:12 pm

Hello Daniel,

Welcome to the forum. We have a list of KC friendly opticians on the website, hopefully one will be near you.

http://www.keratoconus-group.org.uk/optoms/index.php


Lia

Clare
Newbie
Newbie
Posts: 7
Joined: Sun 20 Apr 2014 8:21 pm
Keratoconus: Yes, I have KC
Vision: Spectacles
Location: Guildford
Contact:

Re: To all who have joined this forum recently

Postby Clare » Tue 22 Apr 2014 5:24 pm

I've just joined the forum and wanted to say 'hello'.

I was diagnosed with kerotoconus in my early teens and have never met a fellow sufferer. Its kind of exciting to find a community of people who will (probably?!) understand the frustration of fitting contact lenses, the perils of driving at night and the difficulties in explaining the latter to 20/20 sighted friends!

User avatar
Anne Klepacz
Committee
Committee
Posts: 2003
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 25 Apr 2014 11:51 am

Hello Clare and welcome!
Yes, you'll find lots of people who understand what you're talking about here! And thank you for sharing your experiences on other threads. As it says back at the beginning of this thread, if you'd also like to be on our mailing list for newsletters and other info, just PM or e-mail me your postal address.
All the best
Anne

Gaz2k21
Contributor
Contributor
Posts: 13
Joined: Wed 10 Sep 2014 2:50 am
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Gaz2k21 » Thu 11 Sep 2014 10:43 pm

Hey All,

i'm new to the forum and thought I'd say Hey.... I recently got diagnosed with Keratoconus in both eyes and am currently in the throws of dealing with that (I've explained this in another post so wont bore you guys with the details).
Just would like to say this is a great site and that I would be very interested in some newsletters etc (Anne I've dropped you an e-mail)

Regards

Gareth

Jetbtbelanc
Newbie
Newbie
Posts: 1
Joined: Thu 23 Jun 2016 9:27 am
Keratoconus: Yes, I have KC

Re: To all who have joined this forum recently

Postby Jetbtbelanc » Fri 24 Jun 2016 8:34 pm

Hello evryone?my name is Alex I from Russia.I am 24 years old.I want to tell about my history.I learned about my diagnoses 6 months ago .I was upset.
I had a very big depression I lost my job.I decid leave Moscow and come back in my hometown.My life is chenged.There is a lot of thoughts.I am thinking about my KC everyday.I don"t use any contact leanses(it is very Expansive for me).My left eye is not good(I mean the doubling).My right eye is gone?but it sees worse then that one).Im the past Ihad a beautifull job.Currently I have nothing,Everyday I am thinking about a suicide .I have apathy .I don"t know how to live.

P.S I apologize for mystakes I have been learnig English for 3 months.

User avatar
Lia Williams
Forum Stalwart
Forum Stalwart
Posts: 396
Joined: Thu 16 Feb 2006 5:27 pm
Location: Surrey

Re: To all who have joined this forum recently

Postby Lia Williams » Mon 27 Jun 2016 5:40 pm

Hello Alex,

Welcome to the forum.

I'm sorry to read that keratoconus has caused you to lose your job and your life has had to change. I hope that by returning to your home town that you have the support of your family.

Most people with keratoconus do get better sight with contact lenses than they do with glasses however glasses can help. But a glasses prescription for keratoconus is not straightforward as we often give inconsistent replies to the "better or worse?" questions. If you can try to find an optician who is prepared to spend time with you to optimise your glasses prescription this could help you.

Lia

PS Your English is very good, especially if you've only been learning it for three months

User avatar
CrippsCorner
Forum Stalwart
Forum Stalwart
Posts: 348
Joined: Wed 02 Oct 2013 3:40 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Essex
Contact:

Re: To all who have joined this forum recently

Postby CrippsCorner » Wed 29 Jun 2016 7:52 am

Hi Alex.

I'm sorry you're finding the diagnosis so hard to cope with, and sure, it can be life changing, but there's no reason you can't live a full and happy life with keratoconus. Have you had any appointments with experts to discuss needs? As you say, things can be expensive... but for instance maybe RGP (hard) lenses could be an option as they can last years!

There is also something called cross-linking which can stop your vision from getting any worse, but again it'll probably come at a price.

Olly

Stealth_Za
Newbie
Newbie
Posts: 5
Joined: Wed 17 Aug 2016 7:55 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses

Re: To all who have joined this forum recently

Postby Stealth_Za » Wed 17 Aug 2016 8:17 pm

Hi,

I'm new to the forum. I've been a KC sufferer since around '08 (I'm now 23). I've tried every lens (RGP too painful, piggyback too laborious, soft ones did nothing and hybrids kept clouding after an hour). So safe to say I never used any lens for more than a week after getting them and I've gotten through high school and the first 4 years of medical school (currently in 4th) with nothing but the CXL procedure (done in 08) at my back. I also do a 300km roundtrip every weekend to visit home. So to anyone that's struggling with the diagnosis, push on and try your best to live with the challenge. Coping mechanisms include lots of pc usage with tonnes of zoom (that's basically how I study and get my work done). Complications of this thing though include a now straight cervical spine with radiculopathy and a lot of back pain because of my bad posture associated with reading too close to books and sitting funny to get my face close to the pc screen. So I'm at the physio for that (and the best gf ever who has really helped me with this condition and all it's challenges).

I have however set myself up for scleral lenses which should be arriving next week with final adjustments made. Tried the trials today and it looked/felt gorgeous. None of the nonsense that the other lenses had. Just my 2 cents.

Oh and, hello everyone :)

User avatar
Anne Klepacz
Committee
Committee
Posts: 2003
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 » Sun 21 Aug 2016 2:18 pm

Hello and welcome! All the very best with your new sclerals (and with the remaining years of your medical training)!

Embowme
Newbie
Newbie
Posts: 1
Joined: Fri 19 Aug 2016 4:41 am

Re: To all who have joined this forum recently

Postby Embowme » Sat 27 Aug 2016 3:20 am

Anne Klepacz wrote:Welcome! I hope you'll all get lots of information and support here. We do also have a postal mailing list of UK members who can get our basic information booklet about KC, regular newsletters and other information (eg conference booklets and a DVD of the 2005 conference). So if you'd like to become a 'full' member of the group, do e-mail me with your postal address and I'll send you our introductory information
anne@keratoconus-group.org.uk


Hi,

I just joined recently, just want to say Hello to all.

Cheers,

Mark


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 10 guests