I think the first question to ask Brigid might be whether any attempt has been made in the UK to develop a methodology and if not why that should be? We are unlikely to find any answer if we prefer that the question is never asked.
I fully support this line of thought... I have seen this topic rise and fall many times over the years.
Firstly on the now evaporated 'Center for Keratoconus' website... then on the various alternate websites that sprung up in its wake.
The reaction is always the same and the will (and right) to question is soon stifled. This is not a dig at this forum only a general feeling I have about the discussion of the issue.
I know that these 'support' groups work to a given path... that there are certain taboos.
The main no-no's that springs to mind are questioning the credibility of any 'professional' that lends their time to our cause and the second is the questioning of any modality that has a wide spread general acceptence (By this I mean that we tend to think of Kcer's as made of glass and that we are somehow unable to handle the fact that our treatments may not be cut and dried). There is always more to learn and treatments can only evolve with any certaintly with the input of its patients.
It was this restrictive mentality that lead me to question further than the throw away responses I was initially given as a KC rookie.
The very first question I ever asked on a web forum was at the 'Center for Keratoconus'... I asked why it was that the forum appointed doctors were not even considering the possibility of mini ARK? Why in our limited treatment arena was not EVERY prospect being at least given passing interest? Payment for my question was to be banned (This after my very first post!!)...
I to this day am stunned that a website that proported to be a support network could ban a member seeking advice. It did leave me very bitter but I must say that it probably was the sole reason I decided to hit the alternative trail with such a vengence... which in turn lead me to regaining my sight.
I was subsequently banned from another forum I joined as the mini ark debate again began to hit nerves, and create passionate dialogue. It was not always constructive but at least we were talking and the nuts and bolts were being exposed for all to see.
Its fantastic to have a place where support means a warm rug but sometimes masking the facts is not in everyones best interest.
In this case I dont believe that the contention is that contact lenses cause KC (This is obviously not the sole reason) but that they may contribute to KC's continued evolution. A simple enough question and an extemely valid one I would have thought.
Hopefully with more mainstream backing we will see continued discussion of this subject. The beginning of a possible change of course in the contact lens industries position was signalled within the British Contact Lens Assoc. Oct. 2006 newsletter. Here the president of the BCLA had this to say...
'Be kind to keratoconics’ was the take-home message from the BCLA’s annual Presidential Address, held in London last month, when President Chris Kerr argued that contact lens practitioners should take a holistic and conservative approach to managing patients with keratoconus.
Mr Kerr said that recent studies had proposed a new cascade hypothesis for the development of keratoconus in which chronic ocular trauma played a significant role. Atopy, eye rubbing and RGP contact lens fitting were all implicated and required the practitioner to minimise insult to the cornea.
I have no intention of once again stiring this discussion but in saying that I truelly believe it it one that is vital to have.
Hari