Jump to content


Biomarker for Diffuse Scleroderma skin has been discovered!


Photo

Concern For Others


  • Please log in to reply
2 replies to this topic

#1 Margaret

Margaret

    Platinum Member

  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 10 February 2007 - 01:48 PM

Hi, Everyone....I realize I am fairly new to this forum, but I am upset by the news of Janey and now SSakar has stopped posting. Besides those invovled with the site....Shelley, Janey, Heidi, etc....is there a 'phone support group' where people can call and check on each other. I realize we are scattered around the world, but if someone lives in your state/area, perhaps there is a way we can keep in touch in situations like these.....or is that being too nosey? Just curious. I am the kind of person who would call someone just to find out if everything is OK. I know that on the DS/Autism support site, many of us have become close cyber friends and relayed phone numbers whenever a crisis happened just to keep everyone posted.....kinda like family.
Take care, Everyone.
Margaret

#2 Shelley Ensz

Shelley Ensz

    Root Administrator

  • ISN Root Admin
  • PipPipPipPipPipPipPipPipPipPipPipPip
  • 3,274 posts
  • Location:Minnesota

Posted 10 February 2007 - 02:13 PM

Hi Margaret,

That's a good question, and thank you for bringing it up. We already have our ISN toll free telephone number for people to call. So, for example, Janey's husband called me when she was admitted to ICU, and Janey called me when she felt a little better.

However, we do not post information like that on the website or make it widely available to members because it jeopardizes their personal safety. For example, when people are in the hospital, their family is often there by their side -- leaving their home wide open to burglary.

Unfortunately, many burglars take to the internet to find easy targets nowadays, and victims of illness are the easiest target of all -- especially because they might also have some good drugs (i.e. painkillers) around the house. Plus a working computer, too!

We also do not publicize vacations, for the same reason. If people want to share that information with their friends or elsewhere on the Internet, that's fine. But we try to bypass revealing information like that on our board (as much as we can catch it.)

Not that this is happening in any of our current situations at all, but sometimes people will "play" the message boards and create dire or urgent situations to have everyone sitting on the edge of their seats....and then disappear for awhile to have their (fake surgery, fake disaster) event, with even more harrowing tales upon their return. We've seen that happen many times in our scleroderma online community, mostly perpetrated by one very well-known faker, who uses many different screen names.

So when people call our nonprofit hotline with news or updates on their health or that of family members, we specifically ask them who they want us to *privately* share the information with. Even if they ask, we will not post it on the message board if the person is in the hospital.

People will say, yes, but, they announce the names of all the people in the hospital at our religious services each week. And we say yes, but those are people you know and perhaps people you have reason to trust. That is entirely different than the Internet, where mostly nobody really "knows" anybody, and where untrustworthy people can be present at all times -- sadly enough!

So it is a very real issue, and we do care, and we really do want to know what happens to everyone. But we do not want any members exchanging phone numbers or addresses unless they are absolutely certain of who they are revealing it to. That is just a basic rule of internet safety...for adults and children, alike.

Our toll-free number is 1-800-564-7099. For those outside of the U.S., it is a direct dial (at your expense) phone call to 1-952-831-6091. Or an email to [email protected] with instructions on what people you would like me to notify. It is fine to give our number to your friends and family to notify in case of emergency. (Many people do that, and we do appreciate it!)
Warm Hugs,

Shelley Ensz
Founder and President
International Scleroderma Network (ISN)
Hotline and Donations: 1-800-564-7099

The most important thing in the world to know about scleroderma is sclero.org.

#3 Margaret

Margaret

    Platinum Member

  • Topic Starter
  • Members
  • PipPipPipPipPipPipPipPipPipPip
  • 1,001 posts
  • Location:Pennsylvania

Posted 10 February 2007 - 03:24 PM

Hi Shelly.....it really is a shame our world has come to that, isn't it? I guess I am still on the 'naive' side of this cyber world!!! Thanks for the toll free numer and info for using it.
Take care, Everyone.
Margaret