Community Forum Archive
The Epilepsy Community Forums are closed, and the information is archived. The content in this section may not be current or apply to all situations. In addition, forum questions and responses include information and content that has been generated by epilepsy community members. This content is not moderated. The information on these pages should not be substituted for medical advice from a healthcare provider. Experiences with epilepsy can vary greatly on an individual basis. Please contact your doctor or medical team if you have any questions about your situation. For more information, learn about epilepsy or visit our resources section.
Warning to all regarding posts! Important!
Sun, 01/28/2007 - 06:57I recently did a "Goggle" search of my last name trying to get some family information. Much to my suprise a post I made on these boards came up. (When I first signed up for these boards I used my actual name, my fault of course) I am not sure if this is legal, but I will find out. I thought medical information was private and there are laws of protection against things like that.(H.I.P.P.A etc.)
I don't think it is the worlds business that I have epilepsy, AKA seizure disorder, do you? I realize that what is posted on these boards is quasi-public information, but what are the chances of someone w/o these conditions ever visiting this site? Until I was diagnosed I didn't even know this site existed.
Be careful if you are using your real name and even a screen name. A word to the wise! I will check if this is legal and not protected under privacy laws and re-post once I get the answer from a liar, I mean lawyer.
"easy" everyone.
Comments
Re: Warning to all regarding posts! Important!
Submitted by aquila316 on Mon, 2007-01-29 - 10:29
I recently moved with no warning to my friends, due to getting out of a painful relationship and found out the same thing. One of my friends I haven't spoken to in years did a google search of my old email address (aquila316) and it lead her to my blog here. Fortunately, she read about my recent trip to the hospital, and my plans to spend some much needed time with my parents and was able to contact me. I was shocked when my dad told me she was on the phone, but thrilled that she kept their phone number and called to say hello. I guess it can be a bad thing or a good one, depending how you look at it.
Hugs, and smiles,
Susan
NJM~ This does not
Submitted by wldhrt13 on Mon, 2007-01-29 - 14:44
NJM~
This does not constitute any violation of the HIPPA Laws, [http://www.hipaa.org] because here on these forums it is the patient who is disclosing the information to, in this case, the world. But it can be disconcerting to believe that you were only telling this forum; in actuality, anything you post on the world wide web, can be viewed by any interested party. It is pretty much like you going into a coffee shop and sitting down with a friend to tell them about your seizure disorder. What you say in that booth of the coffee shop is your business, but even though you are only telling your best friend, but if you speak loud enough, the guy in the next booth will overhear your plight.
Pam's LIFE LESSON #423~
What you say in Thailand doesn't always stay in Thailand.
peace out bro
Re: Warning to all regarding posts! Important!
Submitted by spiz on Sun, 2007-01-28 - 08:51
Hopefully this will be of help. If anyone wants to change their personal information they have posted on their info page, go to 'Who's Online' and click on your name (Fastest way). It will take you to your account page. Click on the 'edit' tab above the 'personal information' bar. Once there, click on the 'personal information' catagory. Any personal information there that you don't want others to see, you can change to a nickname or leave it blank altogether. It's not required for these blanks to be filled out to be shown for others to see. Once you have made the changes you wish to make, click on the update button. (Be careful! The delete account button is right beside it...don't hit that one!) Now what you want to show is all that shows on your personal info. Take care! -Spiz