Honest Opinions Please

General forum for the UK Keratoconus and self-help group members.

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Moderators: Anne Klepacz, John Smith, Sweet

holmes
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Contributor
Posts: 40
Joined: Tue 15 Jul 2008 6:54 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Mansfield

Re: Honest Opinions Please

Postby holmes » Sat 30 Aug 2014 8:33 pm

I was 12 when I was diagnosed and it has been a long and turbulent path. The care and treatment options have changed so much I the 26 years since then. I find it reassuring that there are options such as cxl to try to stop or slow the progression of the disease. There is no miracle cure and it is important to take each hurdle as it comes. It is a difficult disease to cope with and it can be a very emotional rollercoaster. I discovered this site about 5 years ago and I wish there had been something like it when I was first diagnosed. It does make things easier when you can discuss problems with people who know what you are talking about! Never give up hope!

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GarethB
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Posts: 4921
Joined: Sat 21 Aug 2004 3:31 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and contact lenses
Location: Warwickshire

Re: Honest Opinions Please

Postby GarethB » Mon 01 Sep 2014 6:32 am

The problem with any support group site is that the people who visit and post most are broadly speaking those who are new and / or experiencing problems with the condition they require support for. You don't often get people who are coping well making regular posts so unfortunatly the psost on support group forums can be very one sided and unnerving for peole new to the condition.

Another issue that I have experienced in the past that when a positive experience is posted the author, they then receive negative responses.

It is difficult on any support group forum to know if the responses are balanced as the number of memebers of the KC Group as far as I am aware still only represents a small proportion of those with KC and even fewer of those people post. I think the same may well be the case when it comes to local group meetings.
Gareth

DavidGable
Contributor
Contributor
Posts: 15
Joined: Mon 10 Sep 2012 7:37 pm
Keratoconus: Yes, I have KC
Vision: Graft(s) and spectacles

Re: Honest Opinions Please

Postby DavidGable » Wed 03 Sep 2014 7:06 pm

I have just watched the DVD of the 2013 Confrence. It is worth watching the first speaker on the treatment of Keratoconus, I found it interesting. I'm sure Anne will send you a copy if you haven't got one already?


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