Looking at the frequency of messages in this forum makes me wonder whether we really need it or not. I have to admit that I like the forum structure more than things like Facebook, but maybe I’m being old fashioned. Or is it that the software we’re using for the forum isn’t especially user friendly.
I think the forum is a great source of information especially for people newly diagnosed or worried they may have the defect gene. Although the postings may be limited there are a large number of people who come onto the site and read the postings, this means that more awareness of the condition is being created which can only be a good thing. It would be a great shame now if the forum was to be closed although I do appreciate it takes a lot of time and effort from you to keep it running.
Well I have just joined as newly found out we have LSF and am hugely relieved to find somewhere to post. Once I am over the shock I’m sure I can help out here in some way. I know a lot about charities and fundraising. Please look at my question I have posted re offspring.
Although this is about a rare condition but it affect real people and real families.Without this forum it will be very lonely journey and I regret not joining it earlier enough.Back in April 2011 my Gastroenterologist said to me don’t worry about this cancer and referred me to general surgeon who had no experience in sarcomas let alone LFS.
Although my geneticist was writing to all these doctors but his letters were going in the files only and even he was fooled by their claim of a cure.The greatest irony is these doctors continue treating people and their practice is so busy it takes weeks to get appointment.
I think there are many more undiagnosed people suffering from this condition so I find forum very helpful an
I agree we should use this more frequently.