Re: SCD testimonials database - any valuable ideas

[Guest guest]

I'm not into conspiracy theories but you know--email addys, IP addys, hometowns, dx, dx dates, nicnames, someone joins the list and gathers information for marketing or worse--much worse reasons.

 

You know, there are world-wide high-tech ordinary people who can time bank robberies just so and not get caught.  Imagine what a corporation or government could do with all the tools they need available ;-).

 

Once you put something on the net, it's pretty much an indefinite thumbprint.  It doesn't go away--ever.

 

Yet I post under my RL name and info.  There is a database of IBDers either through CCFA or NIH so I guess one with IBDers doing SCD doesn't matter.

 

Would this be public?  Lots of information there--for anyone to get.

Not really. You don't have to put your name, you could just put your initials or 'anonymous.' So they wouldn't even know who you are, just your health info, and I doubt they could do anything with that, right? 

Peace =)

Alyssa 16 yo 

UC April 2008, dx Sept 2008

SCD June 2009 (restarted)Azathioprine 50 mg 1x per day

Prednisone 35 mg 1x per day