Collagen cross linking (C3r) poll Please Vote!

[tommy.dean]

Just want to know every uk KC'ers opinions on what is the only treatment/cure solely for our disease, if your not sure what it is or haven't been told enough go to http://www.kcglobal.org they have reliable information on their website.
Please everybody who reads this vote.
tom

[tommy.dean]

79 views and only a handful of votes, what a let down.
tom

[Pat A]

Tommy
(My personal view!) I understand and sympathise with your frustration - but I won't vote on this issue because I do not feel well enough informed to make a vote that is worth making. There is a lot of information available elsewhere but it is conflicting at times and I believe it is wrong at this stage to expect lay people who are members of this forum to vote on this with anything other than emotion! I suspect like everyone else I want an instant cure for KC (even though I may not have it but we won't go there at the moment!) but there simply is not enough evidence to support the statement that C3R is a cure for KC. But do keep posting - your contributions are very valuable!

[tommy.dean]

Hey pat yeah your right about the conflicting information but that's why i posted the kcglobal website along with it. If you go on their wesite you can trust the information.

An alliance of International patients and professionals founded KC Global in 2001 in response to having no information or mis-information about our eye condition, and also due to having no support available to make informed choices.

The KC group could also be like this website but for some reason it chooses to also mis inform.
tom

[Mike Oliver]

I don't have the knowledge to express a view one way or the oyher. I am always a little worried by anything which is said to be the only treatment or cure for any condition or disease.

Simply being descibed by some or referred to as such doesn't make it so - although it would be great if it did!

[tommy.dean]

hey mike, that's what i was like in 2003 /04 an after a conversation with then my surgeon i decided not to look into having the treatment. In hind site with what i know now i wouldn't have had to have grafts and wouldn't have spent the next 3-4 years as a severely visually impaired man. 7 years i spent on the nhs struggling with their so called "treatments" for our disease, with low vision. It took 7 months with the right treatment to rehabilitate my vision. But none of this needed to occur and only through being mis guided and being miss informed it did. I want all people who don't have to go through what i have to know all the facts.
tom