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

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 3:43 pm

I also forgot to mention that after an optician's appointment today my younger son was told that his cornea was changing shape. It is not yet keratoconus but he has to return in six months. He is only seventeen and I had hoped I would not pass this onto my sons. After my treatment I am not sure where the best place for him to be treated would be.

Is there any point in me asking to go back to Moorfields, who refused to help me before? My GP said I had no choice in the matter as I was being seen in my local hospital and there was no more that could be done for me!!!

Jonathan
Newbie
Newbie
Posts: 3
Joined: Mon 25 Jun 2012 8:01 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby Jonathan » Mon 25 Jun 2012 8:13 pm

Hi all,

Just new to this forum, was diagnosed with Keratoconus last week so just trying to get to terms with it and get as much information as possible. Been referred to Moorfield in London so will know more after that i guess.

Just wanted to say hello :-)

Jon

User avatar
Andrew MacLean
Moderator
Moderator
Posts: 7704
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 » Tue 26 Jun 2012 6:43 am

Jon

Welcome to the forum and every good wish with your referral to Moorfields. They are a find hospital with a long tradition of successful treatment and management of keratoconus.

(I have deleted your other post to this string; the message was similar)

Every good wish

Andrew
Andrew MacLean

User avatar
TristanHolmes
Contributor
Contributor
Posts: 10
Joined: Sat 07 Jul 2012 7:09 pm
Keratoconus: Yes, I have KC
Vision: Contact lenses
Location: Newquay
Contact:

Re: To all who have joined this forum recently

Postby TristanHolmes » Sun 08 Jul 2012 6:30 pm

Hello Everyone!
Iv'e never used a forum before so i'm not sure how to use it properly yet. Just wanted to introduce myself as Tristan Holmes. I am twenty six and was diagnosed with KC at fourteen and have been using scleral lenses approx a month or two after diagnosis. I have joined this forum because I am willing to share my experiences of KC with those who seek help or advise, but also because i am looking for advice myself from anyone who is willing to share. I am fortunate to have a good career thanks to sclerals and my contact lens fitter but feel in danger of loosing my career due to transplant being inevitable in the near future. I have been hesitating to apply for a senior position at work and just don't know if its worth it?????

Please has anyone been in a similar situation??
Tristan Holmes

longhoc
Moderator
Moderator
Posts: 349
Joined: Sun 26 Dec 2010 11:13 am
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses

Re: To all who have joined this forum recently

Postby longhoc » Mon 09 Jul 2012 11:02 am

Hi there Tristan -- and welcome to the forum.

Good to read that you're managing with the sclerals, they're not that easy to get used to but after all that time, you must be doing okay with them.

To answer your specific quesiton, there's absolutely no reason why Keratoconus should stop you getting everything you want to out of a career. Not now, with the social, legal and cultural changes which we've been lucky enough to obtain (sometimes we've had to do a little prodding though !) I'm not saying that everything is rosey, mind you, there is still a lot of ignorance about what people with vision loss can and can't do. But if we can demonstrate as individuals that we can progress in our chosen field, it gives everyone a chance to break down barriers because in the process our achievements seem less and less unusual. Maybe one day, it'll simply be accepted as nothing worthy of comment...

Of course a graft, if that's what becomes necessary, will have an impact on your life -- both immediately after the operation and also in the time it takes to get your final vision post-operatively. It isn't, however, anything that a responsible employer shouldn't be able to make changes to accomodate. And whether they like it or not, it's the law. Don't want to be too heavy handed, but there's a legal obligation for employers to provide reasonable adjustments when you need them.

Always a good idea to talk things through with the people in your workplace -- do you have a good manager or HR support team which you could speak to ? Not easy to start off that sort of dialogue, once you've got the ball rolling, it gets easier. Or is it the case that you've got a bit of a suspicion that it's going to be tricky with your workplace ? Sometimes you get a gut feel that there might be problems... Hopefully not, usually the only way to find out for sure is to start asking questions.

Do let us know how you get on -- and also if you need any further information.

Best wishes

Chris

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 » Mon 09 Jul 2012 6:11 pm

In response to Tristan's question. I think it's fantastic that you have managed with your lenses for so long. Is it possible to consider another option rather than a donated cornea?
Yes, they may wonderful if they work, but what if they don't? Would your surgeon agree to re-graft you?
I don't mean to be a damp sqibb but sometimes I wish I had refused my graft.
Re work I would certainly try for promotion. Just because you may be needing a graft it doesn't mean that you don't deserve a new postition in your workplace.
I was forced to hand my notice in to my last employer as they had had enough of my eye infections and the odd operation. Saying that I did not have much luck but hopefully it will be a totally different experience for you. I just had to tell you the other side. I also was not allowed to attend Moorfields again for my surgery as they couldn't understand why I could not tolerate all of the lenses I bought from them and said no surgery was necessary.
Anyway, good luck, don't let this problem stop you from carrying on with what you want to do with your life. I just wish more people who do not suffer from eyesight problems are made more aware of us sufferers!!!
Unfortunately due to my sight, and my age I've had to say no to being a brain surgeon!!!!!

Smudgersmith
Newbie
Newbie
Posts: 9
Joined: Tue 10 Jul 2012 4:11 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby Smudgersmith » Tue 10 Jul 2012 4:34 pm

Hi everyone,

I'm Steven, 22 years old and was diagnosed with Keratoconus literally today and I'm still in the 'scared' stage of not really knowing all the facts. From what I've got at the moment I've found out that it does not cause blindness which was my main fear, however extreme that may seem.

I'm also worried about a whole heap of other things but I'll scan the forum for the answers I can find.

Just thought I'd say hi and wave digitally. So, hi.

Steven

User avatar
Anne Klepacz
Committee
Committee
Posts: 2094
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 10 Jul 2012 7:10 pm

Hi Steven and welcome to the forum!
It's always a bit of a shock to be diagnosed with a condition that no one has ever heard of. But, as you may have already gathered, keratoconus is very variable between individuals and how much it affects the vision. Some people get it very mildly and manage well with glasses, others need contact lenses for the best vision. Only a minority of us ever get to the stage of needing a corneal transplant. And there are far more options for managing KC than there were when I was first diagnosed, both in different types of specialist contact lenses and in other interventions such as crosslinking or Intacs.
If you'd like our information booklet on KC and the DVD of our 2009 conference, which covered the various options in more detail, just e-mail me your postal address and I can send them to you
anne@keratoconus-group.org.uk
And you'll find lots of supportive people here who'll happily try to answer questions you may have.
All the best
Anne

Smudgersmith
Newbie
Newbie
Posts: 9
Joined: Tue 10 Jul 2012 4:11 pm
Keratoconus: Yes, I have KC
Vision: Spectacles

Re: To all who have joined this forum recently

Postby Smudgersmith » Tue 10 Jul 2012 7:15 pm

Thanks Anne,

After going through the forum, glancing topics and whatnot (you're all lovely by the way) I've realised that Keratoconus isn't as life altering as I first thought.

I will indeed send an email over.

Thanks.

Steven

LeanneCameron
Newbie
Newbie
Posts: 1
Joined: Wed 22 Aug 2012 4:16 pm
Keratoconus: Yes, I have KC
Vision: Other

Re: To all who have joined this forum recently

Postby LeanneCameron » Wed 22 Aug 2012 4:27 pm

Hi everybody,

I'm Leanne I'm 22 years old and I was told I had KC in my right eye back in May. I'm still waiting to get an appointment to get fitted for contact lenses so I can actually use the eye but living in hope this will happen soon. Did anyone else have a really long wait? My main reason for joining the forum is to get help and advice, both about the condition and how to manage day to day activities such as driving (realllly scary).

Thanks :)


Return to “General Discussion Forum”

Who is online

Users browsing this forum: No registered users and 18 guests