Hi Steven
Sorry not to have replied straight away to your post but hopefully the following will help explain why.
Since I resigned from the Keratoconus Group committee, and as a moderator from this forum, I have been contacted by many people that have KC, PMD, INTACs, CXL and have post refractive surgery problems etc that share the same point of view as yourself. Furthermore, these groups have little or no support or guidance compared with what we have here for KC. Additionally; many of the issues you raise are more properly addressed by a pressure group rather than a support group, which this forum represents.
After much discussion, a group of us have set up a charity called the Irregular Cornea Foundation (
http://www.ic-f.org) to represent all forms of Irregular Cornea (IC) of which KC is just one. The idea of this foundation is to provide information on all forms of IC and to pool the experience of members, professionals and manufacturing industry in order to be in a position to interact with official bodies such as NICE or other Government agencies to promote our issues. We aim to have a similar recognition as the Glaucoma groups, for example. Since KC is relatively rare, we feel by combining all forms of IC under one banner, we may have more effect.
Steven Williams wrote:There are private optoms who work exclusively with KC
Could you possibly list these with contact details and indicate location for me to pursue.
To be fair to the KC Group, they tried to address this but as far as I am aware the optometrists that registered their details only said they had an interest in KC rather than experience. The problem is, if you post positive feedback about a particular practitioner it looks like endorsement and if you do the same with negative information it could be taken as libel (and there have been issues with this on these boards in the past). We are trying to develop a more equitable and independent system such as a member rating system.
Steven Williams wrote:The only way I can see the KC treatment situation improving in the UK is it being driven by an organised, pro-active and professional KC self help group. Its time these was a steering group set up with the purpose of identifying the places of excellence of KC treatment and also setting up a national centre of excellence.
Indeed! This is exactly what we are trying to do but by creating an organisation that covers more conditions than straight KC. As the conditions are so rare, we have to look outside the UK as well to create sufficient “clout”. This would also include setting up international conferences and seminars to promote education of professionals and stimulate research. Something the French KC group tried a few years ago but unfortunately that has all gone quiet, perhaps representing a wider community may help maintain momentum.
This is all very much in the early stages – we have the bare bones set up and we need members now to drive the Foundation forward. If this is something you or anyone else is interested in helping with then please contact me In the meantime, we are currently trying to get as much together as possible in order to launch. We are in the process of putting together an information pack, which we will distribute to help drum up support and revenue, as well as raising awareness and getting our name out there. As you can imagine, these things take time so the more offer of help the quicker things will be done!
and certainly not in the best interests of KCers.