Can you help RNIB make a film about keratoconus?

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Anne Klepacz
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Can you help RNIB make a film about keratoconus?

Postby Anne Klepacz » Mon 19 Mar 2018 3:53 pm

Do you successfully wear contact lenses for KC and could you reassure recently diagnosed people that the condition doesn't get in the way of most things in life?
We've been approached by the Eye Health Information Service of RNIB for help with a video they're planning. They already produce some good information about KC (see this link http://www.rnib.org.uk/eye-health-eye-c ... eratoconus)
but would like to add one or two stories. This is the information they have sent us -


Can you help us make a film about keratoconus?


We are looking for someone with keratoconus who wears contact lenses to correct their vision to tell their story to camera so that others diagnosed with the condition can find out more about clinically necessary contact lenses.

If you feel that you can tell your story to camera, we would love to hear from you. We will offer you lots of support so it wouldn’t be at all daunting!

If you are aged 18 to 40 and wear contact lenses fitted at hospital for keratoconus and are interested in taking part please contact the RNIB Eye Health Information Service on 020 7391 2014 for more details.

The filming will take place in Central London and we will pay reasonable travel expenses.

We look forward to hearing from you!

Best wishes

RNIB Eye Health Information Service

Jolly Roger
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Re: Can you help RNIB make a film about keratoconus?

Postby Jolly Roger » Sat 24 Mar 2018 12:49 am

If your a KCer under 18 or over 40 apparently you cannot help and it appears you dont matter!

If that is not age discrimination whatever is?

Deplorable and from a registered UK corporate charity!

Jolly Roger
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Re: Can you help RNIB make a film about keratoconus?

Postby Jolly Roger » Mon 26 Mar 2018 9:00 am

If anyone should be involved/steering a film production of KC in the UK it should be this registered charity which is supposed to be the representative body for KCers in the UK. :roll:

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Anne Klepacz
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Re: Can you help RNIB make a film about keratoconus?

Postby Anne Klepacz » Tue 27 Mar 2018 10:39 am

Large charities have the staff and resources to do things that small, volunteer run charities can't do, so working together can give us more of a voice than working alone.
RNIB suggested a younger person for the video as the target audience is those recently diagnosed with KC, who are overwhelmingly young and would relate more to someone nearer their age than to some of us oldies! But that isn't set in stone, and if no one younger is able to help, this will be revisited.
The proposed video is designed to reassure youngsters who may be daunted by the need for specialist contact lenses. It isn't meant to cover the whole variety of KC experience - if this is successful, then it's possible that more videos on other aspects of KC may follow. But for the moment, this is aimed at new generations of people with KC, most of whom will have a very different experience than those of us who were diagnosed before the huge improvements in contact lens technology and before CXL held out the hope of halting progression and avoiding the need for corneal transplants or other surgery. So I hope some forum users will see this as a positive initiative.

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Re: Can you help RNIB make a film about keratoconus?

Postby cloud » Tue 27 Mar 2018 5:21 pm

I'd have tentatively put my name forward for this had it been requested a few years ago.

I'm not sure how 'successfully' I can wear my lens now as tolerance levels have reduced significantly in recent years. I'm not sure how positive and enthusiastic I would come across given my current scenario.

Jolly Roger
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Keratoconus: Yes, I have KC
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Re: Can you help RNIB make a film about keratoconus?

Postby Jolly Roger » Tue 27 Mar 2018 11:40 pm


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Anne Klepacz
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Keratoconus: Yes, I have KC
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Re: Can you help RNIB make a film about keratoconus?

Postby Anne Klepacz » Wed 28 Mar 2018 11:43 am

Thanks, Cloud, and I hope your new semi sclerals that you write about on another thread will in time become more comfortable.
Though I hope any video made will be realistic. While many people with KC manage very well with lenses for many years, there are inevitably bad lens days or vision not being as good later in day, and the times when a lens can't be worn because of an abrasion or infection. So it's finding a balance between being reassuring to the newly diagnosed while acknowledging that there can be setbacks and frustrations at times.

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GeorgeThe2nd
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Can you help RNIB make a film about keratoconus?

Postby GeorgeThe2nd » Thu 05 Apr 2018 11:40 am

"Damage the cause of our group"

KC affects many people extremely differently. Having two youngsters saying “it’s no problem to live with it, with lenses” is a distortion of the truth. [KC usually gets worse after 40].
I think such a limited scope of “case studies” would damage the cause of our group. Many people have advanced KC, some multiple grafts, and many of them have little tolerance to contact lenses, this should also be revealed, in order to tell the truth and set practical expectations!
In some cases KC can be an extremely debilitating disease.

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Re: Can you help RNIB make a film about keratoconus?

Postby space_cadet » Thu 05 Apr 2018 4:56 pm

exactly George, but sadly too many forget aboout those of us whom have had to be registered as ssi / blind due to the state / advancement of our KC. When mine was dx in 2009 one of my 1st questions was "will I go blind" I was told nope, so you can imagine my utter horror when under a year later I was indeed blind! nn folk backtracked with "but you still have light perception"
May09 Diagnosed with KC, March 2010 after a failed transplant it has left me legally blind a long cane user (since 2010) who is blind in a once sighted world


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