UK Keratoconus Self-Help and Support Association

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.

amen! I raised this with the person whose details were on the post as I am legally blind due to KC have been 8 years now (I am 35) n was yet again given the rhetoric of KC doesnt cause blindness" no it wont cause no light perception but then again only <7% of folk who are blind see nothing at all worldwide, but as a long cane user dont invalidate my experience thru ignorance

I agree with the comments above - up to a point. I think the issue here is one which could smack of ageism.
1. The RNIB film is going to be aimed at a younger audience, I understand.
2. The younger audience with progressive KC are more likely to be able get CXL than those of us with a few years under our belts.
3. If you've had CXL, you're less likely to develop severely life-changing KC.

Whilst it is certainly possible to have problems with KC, as I understand it, the chances are less if you undergo CXL, so today's youth have potentially better outcomes than we could have looked forward to at their age.

but surely one a film is in the public domain the target audience is out the window n anyone an potentially have access to it?!

I believe it would be useful to consider where RNIB are coming from which, to my mind, is trying to help and raise awareness. The KC Group does not 'own' keratoconus and we cannot stop other people talking about it or trying to help. We probably have the biggest source of practical experience from which to offer help to others but let's remember, as Anne said, this is an entirely volunteer-run organisation where the time and effort are given for free and we just don't have the resources of the larger bodies. There is absolutely no doubt that in some cases KC has devastating impacts and we should not try to hide it or the complications that can arise but equally we must recognise that in many cases KC can be managed. Any introductory video cannot possibly cover all aspects of the condition and can only be a starting point for looking for more information. I strongly support John Smith's take on the age question and do not agree that an RNIB video could damage the cause of our group. We are all entitled to our opinion and I am stating mine and I would like to think that some others agree.
John