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  • 3 months later...
  • 3 weeks later...
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Carolyn,

 

I don't plaster the information all over the internet. When I talk with any body else on Facebook I don't mention PSC except in private messages (messages that can only be seen by the two of us).  I share more openly within the support group because this is a private group. I have been greatly enriched by getting to know members better through FB and I want others to be enriched too. Being in my friendship list does not mean that you have PSC about half my friends do not (from my church, I know from work, or family). A caution for any body  who does want to join facebook, depending on your settings, anything you post can be seen by your friends and their friends. Like if Carolyn posted a picture and one of our mutual friends commented on it, I would then be able to access that picture and browse though the entire album.

 

Ian

>

> On Facebook you can search my email address *(*icribb@gmail) the same email> at is attached to all my posts to the support group. Sandi has used a> different email address for facebook so try searching by her name (Sandi

> Pearlman). It gives two options, one only has three friends and no profile> picture, the one with lots of friends (nearly 200) is her! Or if you are my> friend you can find her in my friendship list (they are alphabitical by last

> name). or search (leigh@...) and you will find her.=====================Ian,You might keep in mind that not everyone wants all their info plastered about the internet!! I am on facebook (silly me! I didn't realize the PSC Group there was for the 20-30 group and here I am at 50) but under a different name. I like to know just exactly where my info is going and maintain at least a modicum of control over it.

For example, I would definitely not join your friend list for the sole reason that you make it clear to the 1,000+ people who see THIS group, exactly how to access your friend list on Facebook. I'm not trying to hide anything, I'm just a bit leery of who sees what about me! Call it fuddy-dud caution, if you like!

On Facebook I have put a few PSC folks on my friend list, but it's not my primary focus on that group and sometimes the medical issues are nice to ignore for awhile! I tend to use FaceBook for renewing contact with old friends whom I've not seen for 20 or 30 or even 40 years.

Just my two cents.Regards,Carolyn B. in SC

-- Ian Cribb  P.Eng.cell:  (6...Enefen - Reviewer/Designerwww.enefen.com

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