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Biomarker for Diffuse Scleroderma skin has been discovered!


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#1 Jeannie McClelland

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Posted 19 June 2009 - 11:08 AM

Hi Fellow Forum Members,

Time for another thrilling episode of ISN Quick Bytes. These short posts are intended to clarify important points and serve as a helpful reminder. They may also help you to understand why certain things have been edited or even deleted in their entirety.

This first series deals with the Forum Guidelines (which, of course, you read and set to memory when you joined the Forums). The guidelines are always only a click away at the left of the purple toolbar at the top of every Forum page.

In the introduction, we are reminded that: This forum is a free service of the International Scleroderma Network (ISN) at www.sclero.org. The ISN is a nonprofit international patient and medical organization that delivers top notch research, support, education and awareness for scleroderma and related illnesses. All of these guidelines support the ISN's international and nonprofit mission.

Safety and Privacy Our forum messages can be read by everyone, including our spouses, children, doctors, employers, disability examiners, friends, neighbors, credit agencies, landlords, schools, insurance examiners, lawyers, thieves, cyber-criminals, police, courts, stalkers, pedophiles, ex-mates, and potential employers, even many years later. We avoid personal indications of taking pain medication or other addictive medications so that we are not victimized by drug dealers or abusers (Read More). Always guard your privacy, safety and decorum on the internet. Select a unique, unrevealing nickname and username, in keeping with our neutral zone policy. Spammers also frequent our board to harvest email addresses, so we do not permit email addresses within messages. Members will still be able to reach you privately by accessing your profile page.

Ahh, this is something all we nice people don't think about much. Sure, we try to be careful and guard against identity theft and such, but we don't think so much about safety and privacy when we're with friends.

We're all friends here on the Forum aren't we? Well, yes we are. But think about this unpleasant scenario.

We've gotten together with a number of our friends to have coffee at that nice sidewalk café down in the Olde Towne. We're just chatting away and Jeannie (who is a bit of a ditz, you know) starts telling us how her doctor has given in and put her on FlyingHigh for her pain. Everybody is sympathizing and Jane asks if Jeannie isn't concerned about having powerful pain medication in the house when the grandkids visit. No, says Jeannie, I'm real careful about that kind of thing, I keep them on the top shelf of my closet with the guns and our bank books where the kids can't reach them. Then Mary asks if there haven't been a lot of thefts in the area and good old Jeannie (Miss Engage-Mouth-Without-Thinking herself) says yes, but since the break-in at her neighbors, the ones at 612 Hay Meadow, the Grange Close Homeowners' Association has hired private security guards, not that she's ever seen any of them making rounds, but maybe they only patrol at night.

Hmmm, Jeannie is with her friends, but that's a public café, just like our Forum is open to anyone who cares to have a look. Every message on the main Forum is there for anyone to read.

Jeannie has just told everyone within earshot that she has lots of things that are on the Highly Desirable List for thieves, pretty much where she lives, and that the daytime is definitely best for breaking and entering, and even if she is home then, she probably can't put up much of a fight. She thinks she's talking to her friends, but she has absolutely no idea who is listening (or in our case, reading.)

And another thing to be aware of is that people can look at a collection of information from all posts, not just the results of a single post, plus information in our profile and story pages or even information gathered from other parts of the internet, based on our username or IP address. Even giving out a pet's name can be dangerous - if you use that pet's name for your password, which the majority of people do. (I do, but I seem to have given them all totally unpronounceable Gaelic names that even I sometimes have difficulty spelling. :lol: Oops, maybe I shouldn't have said that!)

Got it? Good!! We want all our Forum friends to be as safe as we can possibly help them to be. So how about a new wrinkle here. Please add to this thread with your own safety tips.

Here’s that link again for those of you who just can’t wait for the next Guidelines Quick Byte to arrive: Forum Guidelines (link found in the purple toolbar on every Forum page).

Best wishes and happy posting,
Jeannie McClelland
(Retired) ISN Director of Support Services
(Retired) ISN Sclero Forums Manager
(Retired) ISN Blog Manager
(Retired) ISN Assistant News Guide
(Retired) ISN Artist
International Scleroderma Network

#2 jefa

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Posted 21 June 2009 - 08:23 PM

Good post, Jeannie. I have really appreciated these Quick Bytes.

Since you mentioned passwords, let me give my two cents. I have been working with computers and computer users since the 70s and have been amazed at how obvious some of the password choices have been, often even the word password itself. Considering that memory problems are strong among us, just remembering a password can be a real problem. But it makes a lot of sense to use care with passwords. A lot of programs won't let you get away with an easy password these days. A secure password should have at least eight characters, at least one of which is a number. Since most passwords are case sensitive, you can make it more difficult to guess by making some of the letters capital or replace letters with numbers which look like letters, such as using a 3 instead of an E. You can use other characters such as punctuation. You could spell a word backwards or use the first letters of a phrase that means something only you will think of: My friend Paula has 16 pairs of purple socks. = MfPh16pops (now, who is going to guess that?)

And you shouldn't use the same password every place you go. Once someone has figured it out, it's all to easy to go searching for other places to use it.
Warm wishes,
Jefa

Carrie Maddoux
(Retired)ISN Sclero Forums Support Specialist
(Retired)ISN Sclero Forums UK Chat Host

International Scleroderma Network (ISN)

#3 Margaret

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Posted 22 June 2009 - 12:59 AM

<<We avoid personal indications of taking pain medication or other addictive medications >>

Oops.....I'm guilty of this!!! I do tend to *forget* that it is open to the world and not everyone reading may be my friend. Thanks for the reminder, Jeannie. You guys have always been so supportive and *easy to talk to* that I assume everyone is good.

Take care, Everyone.
Margaret

#4 Shelley Ensz

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Posted 23 June 2009 - 08:02 AM

Hi Margaret,

Oh yeah! And it's so easy to say, the doctor put me on very high doses of a narcotic pain medication today. I hope it gets me through until I go to the hospital on Thursday. I should be out in a week or so, after knee surgery.

Never realizing that other people could put this together with prior information, like our name (which anyone can use to find our address) or our IP address, which narrows things down geographically quite well, etc.

We do try to edit out revealing things that could be hazardous to personal safety, but the burden still must remain primarily on members, to protect privacy and safety not only on our forum, but on other internet and public places, as well. It's enough to suffer from scleroderma, without also suffering from internet (or community) predators!

I know how hard it is to want to let people know that we are going in the hospital or on vacation, etc. Or even that we are so sick that we are requiring very strong medication to control symptoms.

But it is fair game for us to talk about vacations or hospitalizations when we return! Then if anything untoward does happen while you're gone, at least none of us are suspect...and we'd sure like to keep it that way forever.
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.

#5 debonair susie

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Posted 25 June 2009 - 06:08 AM

Thanks, Jeannie and Jefa!

It's true, Margaret...it IS so easy to talk with "our family" here...feeling great comfort/ease.
Special Hugs,

Susie Kraft
ISN Support Specialist
ISN Chat Host
International Scleroderma Network (ISN)